A recent Canadian research article provides recommendations on medications for managing symptoms in seriously ill babies who are receiving palliative care outside the neonatal intensive care unit (NICU).1 Beyond providing technical guidance, this study casts light on the value of these tiny babies, their capacity for pain, and their essentially human need for connection and closeness with their parents and families.
Summary of study
The authors begin by discussing the current landscape of perinatal palliative care. Owing to technological advances, life-limiting fetal conditions are being diagnosed more frequently, often well before birth. (A “life-limiting diagnosis” is defined in the study as “a fetal condition in which there is a shortened life expectancy with no reasonable hope for cure.”) In Canada (as in the US), congenital anomalies are the most common cause of infant mortality.2 Many life-limiting conditions are diagnosed prenatally, while others do not become apparent until birth or the first few days of infancy.
When a life-limiting condition is diagnosed before birth, some parents, rather than opting for an abortion, decide to continue the pregnancy and let nature take its course. According to the authors, many parents who make this decision want to “have a chance to meet their baby at birth” and enjoy whatever time they have with the baby. Others are motivated by religious, philosophical, cultural, or social considerations, such as a belief that abortion is morally wrong. Still others continue the pregnancy simply because abortion is illegal or not easily accessible.
Perinatal palliative care is a multidisciplinary field that provides supportive care, both before and after birth, for seriously ill babies and their families. It aims to improve the baby’s quality of life and alleviate suffering. Palliative care may be provided for babies who are undergoing intensive treatment aimed at curing their disease, as well as for those receiving only comfort care.
The authors emphasize practitioners’ need for guidance on appropriate pharmacological management for common end-of-life symptoms in babies with life-limiting conditions. Although perinatal palliative care has been provided for decades, current guidance on symptom management is sparse and mostly limited to the NICU setting. By contrast, this study focuses on nonspecialized settings (e.g. labor, delivery, and recovery rooms). The authors provide recommendations for readily available, easy-to-use medications that can be dosed by weight and administered by noninvasive routes.
The recommendations in this study were made by an interdisciplinary committee at The Ottawa Hospital, which developed a list of medications and dosages for initial management of symptoms commonly experienced by seriously ill newborns shortly after delivery. Medications were chosen based on their safety, efficacy, availability, and ease of use. In addition, all the medications selected can be administered noninvasively, an important consideration in settings (e.g. birthing and postpartum wards) where using invasive routes may be difficult or impossible. Dosing recommendations are based on birth weight and cover the range from extremely premature (before 28 weeks) to full-term newborns.
The medications selected by the committee are morphine, fentanyl, midazolam, and atropine. Clinicians may choose either morphine, administered buccally (in the cheeks), or fentanyl, given intranasally, to relieve pain, shortness of breath, and general discomfort. Midazolam may be administered either buccally, sublingually (under the tongue), or intranasally to prevent or treat seizures and sedate anxious, agitated babies. Atropine eye drops should be given sublingually to reduce excessive airway secretions. Finally, oral sucrose is recommended to increase the newborn’s general comfort.
According to the authors, noninvasive administration of medication is safe and effective in these newborns, especially when combined with comfort measures like kangaroo care (i.e. skin-to-skin contact with the mother or father). As for all babies, medications should be titrated by weight. Doses can be adjusted for babies with low, very low, or extremely low birth weight. The authors emphasize that these medications are being given solely to comfort the baby (and the family), not to hasten death.
The authors conclude by noting that the guidance in this study is designed to be applicable across countries and in a wide range of birth settings, including smaller or rural hospitals without a NICU or a specialized neonatal care team. Symptom relief keeps the baby comfortable and prevents the parents and hospital staff from becoming distressed. Hospitals can use the simple guidance provided in this study to develop standard medication orders for newborns with life-limiting conditions, which will improve the quality of care, particularly in facilities that do not specialize in treating seriously ill babies.
This study contains some interesting observations, based on the authors’ clinical experiences, that reflect the humanity of fetuses and newborns and their status as full members of their families. The authors note, “If a diagnosis is known antenatally, some parents may decide to continue the pregnancy, in part, to have a chance to meet their baby at birth, although they are aware that the precious time spent with their baby may be limited.” Through this statement, the authors are acknowledging the sick newborn as a real person, someone whom her parents can “meet” and spend time with, just as people try to spend as much time as they can with elderly and seriously ill relatives who are near death.
The authors explain that perinatal palliative care “focuses on maximizing quality of life and comfort, regardless of the length of perinatal survival.” No matter how long or short the baby’s life is, palliative care specialists try to make him as comfortable and happy as possible while he’s here. We tend to visualize adult patients when we hear the terms “comfort” and “quality of life,” but the field of perinatal palliative care recognizes that they are just as applicable to a newborn. The fact that palliative care specialists are involved as soon as an adverse diagnosis is made (which can be months before birth) indicates that they consider fetal comfort important too.
As the authors repeatedly emphasize, perinatal palliative care focuses on the family’s needs as well as the baby’s. Symptomatic medications are often administered as much to relieve parental distress as to comfort the sick newborn. They also stress that perinatal palliative care includes much more than pharmacological management of the baby’s symptoms. It includes “memory-making” (e.g. photographs, ink prints of hands and feet); assistance with burial, funeral, and memorial arrangements; and bereavement support. In the authors’ experience, good palliative care incorporates the family’s spiritual, religious, and cultural practices.
The psychosocial elements of perinatal palliative care are significant, because they challenge a common belief about miscarriage, stillbirth, and neonatal death. Many people assume that parents who experience pregnancy and infant loss are merely grieving “what could have been” – that they’re upset they will never witness their child’s first day of school, high school graduation, wedding, etc. However, these parents want to remember their baby as a member of their family, as an actual person who lived and died, rather than as a “potential person” who merely “could have been.” They keep mementos for these babies just as they would save artwork and photos for older children. They treat their children’s remains as human bodies, and they mourn and grieve for them the way they would any other family member.
The authors also mention that all medications in their recommended order set are commonly used for neonatal, pediatric, and adult palliative care. Newborns receive the same medications as older children and adults,5-7 just in smaller doses. What’s more, the drugs are used to treat the same conditions.5-7 Symptoms such as pain, shortness of breath, agitation, and anxiety are common to dying people of all age groups,8-10 which undercuts the notion that preterm babies (and by extension, fetuses of the same age) are categorically different beings than older humans.
Based both on their research and their clinical experience, the authors conclude that “administration of medications via non-invasive routes is very well tolerated with little to no side effects in this fragile population.” But they add that medical management of symptoms “works best when combined with comfort measures such as skin-to-skin care provided by the families.” Like older children and adults, newborns need the “human touch” – especially the touch of their mothers and fathers.11-13 Skin-to-skin contact with loved ones is important for humans at any age.14,15 The child in utero is in constant physical contact with her mother, connected through the umbilical cord and the placenta. Once we are older, we no longer need that same level of closeness to another person. But the basic need for physical and emotional connection never disappears. The comfort that dying babies feel when being held by their parents, so similar to what people of all ages experience in the arms of their loved ones, is a clear signal of our common humanity.
Finally, the authors stress the importance of minimizing neonatal pain during medical procedures. When possible, health care providers administering medications to newborns (or older infants) should avoid invasive routes of delivery, for several reasons. Not only are invasive procedures (e.g. intravenous [IV] insertion, intramuscular or subcutaneous injections, nasogastric tube placement) cumbersome and technically challenging, but they can be very painful for a baby, especially a tiny preterm newborn. Noninvasive administration is more comfortable for the baby and less distressing for the parents and the medical team.
This caution is striking. There was a time, not too long ago, when doctors doubted the capacity of babies – especially severely preterm babies – to feel pain.16 As recently as the 1980s, newborns undergoing painful procedures were often given only a paralytic, not anesthesia.17 We now know better. Even procedures that generally cause only mild pain in adults, such as IV insertions or intramuscular injections, can be very distressing for newborns,18 especially extremely premature ones.17
The ability of extremely preterm newborns to feel pain provides very strong evidence for the existence of fetal pain, directly contradicting the common assertion of abortion activists that fetal pain is impossible until at least the third trimester.19 Needless to say, if a neonate born at 22 weeks gestation (about 20 weeks postfertilization) can feel pain, a fetus of the same age almost certainly can, too.20 As science and medicine continue to evolve, many of the things we “know” about the capabilities of unborn children may eventually be disproven, just as physicians’ disbelief in neonatal pain was. We would do well to keep that in mind.
- Veldhuijzen van Zanten S, Ferretti E, MacLean G, et al. Medications to manage infant pain, distress and end-of-life symptoms in the immediate postpartum period. Expert Opin Pharmacother. 2021;1-6. doi: 10.1080/14656566.2021.1965574
- CDC. Infant mortality. Accessed 6 November 2021. https://www.cdc.gov/reproductivehealth/maternalinfanthealth/infantmortality.htm
- Blakeley C, Smith DM, Johnstone ED, Wittkowski A. Parental decision-making following a prenatal diagnosis that is lethal, life-limiting, or has long term implications for the future child and family: a meta-synthesis of qualitative literature. BMC Med Ethics. 2019;20(1):56. doi: 10.1186/s12910-019-0393-7
- France EF, Locock L, Hunt K, Ziebland S, Field K, Wyke S. Imagined futures: how experiential knowledge of disability affects parents’ decision making about fetal abnormality. Health Expect. 2012;15(2):139-156. doi: 10.1111/j.1369-7625.2011.00672.x
- Cortezzo DME, Meyer M. Neonatal end-of-life symptom management. Front Pediatr. 2020;8:574121. doi: 10.3389/fped.2020.574121
- Marquis MA, Daoust L, Villeneuve E, Ducruet T, Humbert N, Gauvin F. Clinical use of an order protocol for distress in pediatric palliative care. Healthcare (Basel). 2019;7(1):3. doi: 10.3390/healthcare7010003
- Masman AD, van Dijk M, Tibboel D, Baar FPM, Mathôt RAA. Medication use during end-of-life care in a palliative care centre. Int J Clin Pharm. 2015;37(5):767-775. doi: 10.1007/s11096-015-0094-3
- NIH. National Cancer Institute. Last days of life (PDQ®) – health professional version. Accessed 6 November 2021. https://www.cancer.gov/about-cancer/advanced-cancer/caregivers/planning/last-days-hp-pdq
- Wilkie DJ, Ezenwa MO. Pain and symptom management in palliative care and at end of life. Nurs Outlook. 2012;60(6):357-364. doi: 10.1016/j.outlook.2012.08.002
- Spruit JL, Prince-Paul M. Palliative care services in pediatric oncology. Ann Palliat Med. 2019;8(Suppl 1):S49-S57. doi: 10.21037/apm.2018.05.04
- Field T. Infants’ need for touch. Hum Dev. 2002;45(2):100-103. doi: 10.1159/000048156
- Moore ER, Bergman N, Anderson GC, Medley N. Early skin-to-skin contact for mothers and their healthy newborn infants. Cochrane Database Syst Rev. 2016;11(11):CD003519. doi: 10.1002/14651858.CD003519.pub4
- Shorey S, He H-G, Morelius E. Skin-to-skin contact by fathers and the impact on infant and paternal outcomes: an integrative review. Midwifery. 2016;40:207-217. doi: 10.1016/j.midw.2016.07.007
- Floyd K. Relational and health correlates of affection deprivation. West J Commun. 2014;78(4):383-403. doi: 10.1080/10570314.2014.927071
- von Mohr M, Kirsch LP, Fotopoulou A. The soothing function of touch: affective touch reduces feelings of social exclusion. Sci Rep. 2017;7(1):13516. doi: 10.1038/s41598-017-13355-7
- Puchalski M, Hummel P. The reality of neonatal pain. Adv Neonatal Care. 2002;2(5):233-247. doi: 10.1053/adnc.2002.35486
- McPherson C, Miller SP, El-Dib M, Massaro AN, Inder TE. The influence of pain, agitation, and their management on the immature brain. Pediatr Res. 2020;88(2):168-175. doi: 10.1038/s41390-019-0744-6
- Foster JP, Taylor C, Spence K. Topical anaesthesia for needle-related pain in newborn infants. Cochrane Database Syst Rev. 2017;2(2):CD010331. doi: 10.1002/14651858.CD010331.pub2
- ACOG. Facts are important: fetal pain. Accessed 6 November 2021. https://www.acog.org/advocacy/facts-are-important/fetal-pain
- Derbyshire SWG, Bockmann JC. Reconsidering fetal pain. J Med Ethics. 2020;46(1):3-6. doi: 10.1136/medethics-2019-105701