The Role of Perinatal Palliative Care in Fetal Neurology

Abstract

Objectives Many serious or life-threatening neurologic conditions are first diagnosed during the fetal period, often following a routine ultrasound or sonographic evaluation after an abnormal aneuploidy screen. Such conditions represent a worrisome or unexpected finding for expectant parents, making the perinatal period a critical time point to engage and empower families encountering complex neurologic clinical scenarios. This review covers the role of perinatal palliative care in these settings.

Study Design This study is a topical review

Results The prenatal identification of structural abnormalities of the brain or spinal cord, radiographic signs of hemorrhage or ischemic injury, or evidence of genetic or metabolic conditions should prompt involvement of a fetal palliative care team. The inherent prognostic uncertainty is challenging for prenatally diagnosed neurologic conditions which have difficult to predict short and long-term outcomes. While many of these conditions lead to the birth of an infant with neurodevelopmental challenges, few result in in utero demise. Palliative care beginning in the perinatal period provides an additional layer of support for families navigating complex decision-making during their pregnancy and provides continuity of care into the newborn period. Palliative care principles can help guide discussions around genetic and other diagnostic testing, fetal surgery, and birth planning. A multidisciplinary team can help support families with decision-making and through bereavement care in the setting of fetal or neonatal death.

Conclusion Early palliative care team involvement can provide a more holistic approach to counseling, facilitate planning, and ensure that a family's goals and wishes are acknowledged throughout an infant's care trajectory.

Key Points

• Many serious or life-threatening neurologic conditions are diagnosed during the fetal period.

• Palliative care principles should be incorporated in the fetal period for affected patients.

• Palliative care clinicians can aid parents and clinicians in shared decision-making.

• Palliative care principles should be employed by all care providers in relevant cases.

Keywords

palliative care - fetal - neonatal - neurology

Publication History

Received: 07 July 2021

Accepted: 24 October 2021

Accepted Manuscript online:
28 October 2021

Article published online:
02 December 2021

• References

• 1 Lemmon ME, Bidegain M, Boss RD. Palliative care in neonatal neurology: robust support for infants, families and clinicians. J Perinatol 2016; 36 (05) 331-337
• 2 Kenner C, Press J, Ryan D. Recommendations for palliative and bereavement care in the NICU: a family-centered integrative approach. J Perinatol 2015; 35 (Suppl. 01) S19-S23
• 3 Creutzfeldt CJ, Robinson MT, Holloway RG. Neurologists as primary palliative care providers: communication and practice approaches. Neurol Clin Pract 2016; 6 (01) 40-48
• 4 Courtwright AM, Laughon MM, Doron MW. Length of life and treatment intensity in infants diagnosed prenatally or postnatally with congenital anomalies considered to be lethal. J Perinatol 2011; 31 (06) 387-391
• 5 Parravicini E, Lorenz JM. Neonatal outcomes of fetuses diagnosed with life-limiting conditions when individualized comfort measures are proposed. J Perinatol 2014; 34 (06) 483-487
• 6 Glass HC, Rogers EE, Peloquin S, Bonifacio SL. Interdisciplinary approach to neurocritical care in the intensive care nursery. Semin Pediatr Neurol 2014; 21 (04) 241-24
• 7 Monaghan KG, Leach NT, Pekarek D, Prasad P, Rose NC. ACMG Professional Practice and Guidelines Committee. The use of fetal exome sequencing in prenatal diagnosis: a points to consider document of the American College of Medical Genetics and Genomics (ACMG). Genet Med 2020; 22 (04) 675-680
• 8 Timor-Tritsch IE, Fuchs KM, Monteagudo A, D'alton ME. Performing a fetal anatomy scan at the time of first-trimester screening. Obstet Gynecol 2009; 113 (2, pt. 1): 402-407
• 9 Gil MM, Quezada MS, Revello R, Akolekar R, Nicolaides KH. Analysis of cell-free DNA in maternal blood in screening for fetal aneuploidies: updated meta-analysis. Ultrasound Obstet Gynecol 2015; 45 (03) 249-266
• 10 Norwitz ER, Levy B. Noninvasive prenatal testing: the future is now. Rev Obstet Gynecol 2013; 6 (02) 48-62
• 11 Zhang S, Lei C, Wu J. et al. A retrospective study of cytogenetic results from amniotic fluid in 5328 fetuses with abnormal obstetric sonographic findings. J Ultrasound Med 2017; 36 (09) 1809-1817
• 12 Monteagudo A. Society for Maternal-Fetal Medicine (SMFM). Holoprosencephaly. Am J Obstet Gynecol 2020; 223 (06) B13-b16
• 13 Dubourg C, Bendavid C, Pasquier L, Henry C, Odent S, David V. Holoprosencephaly. Orphanet J Rare Dis 2007; 2: 8
• 14 Jelin AC, Vora N. Whole exome sequencing: applications in prenatal genetics. Obstet Gynecol Clin North Am 2018; 45 (01) 69-81
• 15 Adzick NS, Thom EA, Spong CY. et al; MOMS Investigators. A randomized trial of prenatal versus postnatal repair of myelomeningocele. N Engl J Med 2011; 364 (11) 993-1004
• 16 Gregory KD, Jackson S, Korst L, Fridman M. Cesarean versus vaginal delivery: whose risks? Whose benefits?. Am J Perinatol 2012; 29 (01) 7-18
• 17 Nelson JE, Mercado AF, Camhi SL. et al. Communication about chronic critical illness. Arch Intern Med 2007; 167 (22) 2509-2515
• 18 Sumner LH, Kavanaugh K, Moro T. Extending palliative care into pregnancy and the immediate newborn period: state of the practice of perinatal palliative care. J Perinat Neonatal Nurs 2006; 20 (01) 113-116
• 19 Kukora S, Gollehon N, Laventhal N. Antenatal palliative care consultation: implications for decision-making and perinatal outcomes in a single-centre experience. Arch Dis Child Fetal Neonatal Ed 2017; 102 (01) F12-F16
• 20 Madeuf A, Roman H, Verspyck E. Continuation of pregnancy despite a diagnosis of severe fetal anomaly: a retrospective French study. Acta Obstet Gynecol Scand 2016; 95 (08) 934-940
• 21 Hostalery L, Tosello B. Outcomes in continuing pregnancies diagnosed with a severe fetal abnormality and implication of antenatal neonatology consultation: a 10-year retrospective study. Fetal Pediatr Pathol 2017; 36 (03) 203-212
• 22 Bidegain M, Younge N. Comfort care vs. palliative care: is there a difference in neonates?. Neoreviews 2015; 16 (06) 333-339
• 23 Rossi AC, Prefumo F. Correlation between fetal autopsy and prenatal diagnosis by ultrasound: a systematic review. Eur J Obstet Gynecol Reprod Biol 2017; 210: 201-206
• 24 Page JM, Silver RM. Stillbirth: evaluation and follow-up. Obstet Gynecol Clin North Am 2020; 47 (03) 439-451
• 25 Robinson MR, Thiel MM, Backus MM, Meyer EC. Matters of spirituality at the end of life in the pediatric intensive care unit. Pediatrics 2006; 118 (03) e719-e729
• 26 Ellis MR, Campbell JD. Patients' views about discussing spiritual issues with primary care physicians. South Med J 2004; 97 (12) 1158-1164
• 27 Kenner C, Press J, Ryan D. Recommendations for palliative and bereavement care in the NICU: a family-centered integrative approach. J Perinatol 2015; 35 (1, suppl 1) S19-S23
• 28 Dyer KA. Identifying, understanding, and working with grieving parents in the NICU, part I: identifying and understanding loss and the grief response. Neonatal Netw 2005; 24 (03) 35-46
• 29 Kaye EC, Rubenstein J, Levine D, Baker JN, Dabbs D, Friebert SE. Pediatric palliative care in the community. CA Cancer J Clin 2015; 65 (04) 316-333
• 30 Boyden JY, Curley MAQ, Deatrick JA, Ersek M. Factors associated with the use of U.S. community-based palliative care for children with life-limiting or life-threatening illnesses and their families: an integrative review. J Pain Symptom Manage 2018; 55 (01) 117-131
• 31 Lindley LC, Newnam KM. Hospice use for infants with life-threatening health conditions, 2007 to 2010. J Pediatr Health Care 2017; 31 (01) 96-103
• 32 Badenhorst W, Riches S, Turton P, Hughes P. The psychological effects of stillbirth and neonatal death on fathers: systematic review. J Psychosom Obstet Gynaecol 2006; 27 (04) 245-256
• 33 Côté-Arsenault D, Denney-Koelsch E. “Have no regrets:” Parents' experiences and developmental tasks in pregnancy with a lethal fetal diagnosis. Soc Sci Med 2016; 154: 100-109
• 34 Lechner BE. Of tragedies and miracles - neonatal organ donation. N Engl J Med 2018; 379 (22) 2089-2091
• 35 Moise Jr KJ. The usefulness of middle cerebral artery Doppler assessment in the treatment of the fetus at risk for anemia. Am J Obstet Gynecol 2008; 198 (02) 161.e1-161.e4
• 36 Chervenak FA, McCullough LB. Ethics of fetal surgery. Clin Perinatol 2009; 36 (02) 237-246 , vii–viii
• 37 Kuppermann M, Learman LA, Gates E. et al. Beyond race or ethnicity and socioeconomic status: predictors of prenatal testing for Down syndrome. Obstet Gynecol 2006; 107 (05) 1087-1097
• 38 Kuppermann M, Nakagawa S, Cohen SR, Dominguez-Pareto I, Shaffer BL, Holloway SD. Attitudes toward prenatal testing and pregnancy termination among a diverse population of parents of children with intellectual disabilities. Prenat Diagn 2011; 31 (13) 1251-1258
• 39 Case AP, Ramadhani TA, Canfield MA, Wicklund CA. Awareness and attitudes regarding prenatal testing among Texas women of childbearing age. J Genet Couns 2007; 16 (05) 655-661