Download PDF
Am J Perinatol 2023; 40(12): 1373-1377
DOI: 10.1055/s-0041-1740251
Clinical Opinion

A Scoping Review of Perinatal Palliative Care: Allowing Parents to Be Parents

Cara Buskmiller 
1   Department of Obstetrics, Gynecology, and Reproductive Sciences, The University of Texas Health Science Center at Houston, Houston, Texas
,
Byron C. Calhoun
2   Perinatal Diagnostic Center, Charleston Area Medical Center, Charleston, West Virginia
› Author Affiliations Funding None.
› Further Information
Also available at
    Permissions and Reprints

Abstract

Objective Perinatal palliative care (PPC) is an option for patients who discover that their infant has a life-limiting fetal condition, which decreases the burden of the condition using a multidisciplinary approach.

Study Design This review discusses the landmark literature in the past two decades, which have seen significant growth and development in the concept of PPC.

Results The literature describes the background, quality, and benefits of offering PPC, as well as the ethical principles that support its being offered in every discussion of fetal life-limiting diagnoses.

Conclusion PPC shares a similar risk profile to other options after life-limiting diagnosis, including satisfaction with choice of continuation of pregnancy. The present clinical opinion closes by noting common barriers to establishing PPC programs and offers a response to overcome each one.

Key Points

  • Perinatal palliative care serves patients who continue pregnancies with life-limiting fetal anomaly.

  • Perinatal palliative care has a risk profile similar to other options such as termination.

  • Health care providers can serve as champions to extend PPC to patients in their region.

Keywords

perinatal palliative care - perinatal hospice - life-limiting condition - fetal anomaly - congenital - prenatal diagnosis

Authors' Contributions

B.C.C. and C.B. conceptualized the work. C.B. curated and analyzed data. C.B. prepared the original draft, and all authors were involved in revising and editing. All authors approved the final version of the manuscript.




Publication History

Received: 07 July 2021

Accepted: 05 October 2021

Article published online:
02 December 2021

© 2021. Thieme. All rights reserved.

Thieme Medical Publishers, Inc.
333 Seventh Avenue, 18th Floor, New York, NY 10001, USA

 

  • References

  • 1 Denney-Koelsch EM, Cote-Arsenault D. eds. Perinatal Palliative Care: A Clinical Guide. Cham, Switzerland: Springer; 2020
    CrossrefGoogle Scholar
  • 2 Calhoun BC, Hoeldtke NJ, Hinson RM, Judge KM. Perinatal hospice: should all centers have this service?. Neonatal Netw 1997; 16 (06) 101-102
    PubMedGoogle Scholar
  • 3 Denney-Koelsch E, Black BP, Côté-Arsenault D, Wool C, Kim S, Kavanaugh K. A survey of perinatal palliative care programs in the United States: structure, processes, and outcomes. J Palliat Med 2016; 19 (10) 1080-1086
    CrossrefPubMedGoogle Scholar
  • 4 List of programs. Published 2021. Accessed May 21, 2021 at: PerinatalHospice.org
    PubMedGoogle Scholar
  • 5 Wool C, Côté-Arsenault D, Perry Black B, Denney-Koelsch E, Kim S, Kavanaugh K. Provision of services in perinatal palliative care: a multicenter survey in the United States. J Palliat Med 2016; 19 (03) 279-285
    CrossrefPubMedGoogle Scholar
  • 6 Murphy SL, Xu J, Kochanek KD, Arias E. Mortality in the United States, 2017. NCHS Data Brief 2018; (328) 1-8
    PubMedGoogle Scholar
  • 7 Catlin A, Carter B. Creation of a neonatal end-of-life palliative care protocol. J Perinatol 2002; 22 (03) 184-195
    CrossrefPubMedGoogle Scholar
  • 8 Siegel RL, Miller KD, Jemal A. Cancer statistics, 2015. CA Cancer J Clin 2015; 65 (01) 5-29
    CrossrefPubMedGoogle Scholar
  • 9 Côté-Arsenault D, Denney-Koelsch E. “My baby is a person”: parents' experiences with life-threatening fetal diagnosis. J Palliat Med 2011; 14 (12) 1302-1308
    CrossrefPubMedGoogle Scholar
  • 10 Wool C. Systematic review of the literature: parental outcomes after diagnosis of fetal anomaly. Adv Neonatal Care 2011; 11 (03) 182-192
    CrossrefPubMedGoogle Scholar
  • 11 Kersting A, Wagner B. Complicated grief after perinatal loss. Dialogues Clin Neurosci 2012; 14 (02) 187-194
    CrossrefPubMedGoogle Scholar
  • 12 Korenromp MJ, Page-Christiaens GCML, van den Bout J, Mulder EJH, Visser GHA. Adjustment to termination of pregnancy for fetal anomaly: a longitudinal study in women at 4, 8, and 16 months. Am J Obstet Gynecol 2009; 201 (02) 160.e1-160.e7
    CrossrefPubMedGoogle Scholar
  • 13 Janssen HJ, Cuisinier MC, Hoogduin KA, de Graauw KP. Controlled prospective study on the mental health of women following pregnancy loss. Am J Psychiatry 1996; 153 (02) 226-230
    CrossrefPubMedGoogle Scholar
  • 14 Centers for Disease Control and Prevention (CDC). Maternal mortality–United States, 1982-1996. MMWR Morb Mortal Wkly Rep 1998; 47 (34) 705-707
    PubMedGoogle Scholar
  • 15 Lawson HW, Frye A, Atrash HK, Smith JC, Shulman HB, Ramick M. Abortion mortality, United States, 1972 through 1987. Am J Obstet Gynecol 1994; 171 (05) 1365-1372
    CrossrefPubMedGoogle Scholar
  • 16 Calhoun BC, Napolitano P, Terry M, Bussey C, Hoeldtke NJ. Perinatal hospice. Comprehensive care for the family of the fetus with a lethal condition. J Reprod Med 2003; 48 (05) 343-348
    PubMedGoogle Scholar
  • 17 D'Almeida M. Perinatal hospice: family-centered care of the fetus with a lethal condition. Issues Law Med 2006; 22 (01) 102
    PubMedGoogle Scholar
  • 18 Spinnato JA, Cook VD, Cook CR, Voss DH. Aggressive intrapartum management of lethal fetal anomalies: beyond fetal beneficence. Obstet Gynecol 1995; 85 (01) 89-92
    CrossrefPubMedGoogle Scholar
  • 19 Balaguer A, Martín-Ancel A, Ortigoza-Escobar D, Escribano J, Argemi J. The model of Palliative Care in the perinatal setting: a review of the literature. BMC Pediatr 2012; 12: 25
    CrossrefPubMedGoogle Scholar
  • 20 Sundén B. On the diagnostic value of ultrasound in obstetrics and gynæcology. Acta Obstet Gynecol Scand 1964; 43 (S6): 1-191
    CrossrefPubMedGoogle Scholar
  • 21 Valenti C, Schutta EJ, Kehaty T. Prenatal diagnosis of Down's syndrome. Lancet 1968; 2 (7561): 220-220
    CrossrefPubMedGoogle Scholar
  • 22 Society for Maternal-Fetal Medicine (SMFM) Publications Committee. Electronic address: esteele@smfm.org. SMFM Statement: clarification of recommendations regarding cell-free DNA aneuploidy screening. Am J Obstet Gynecol 2015; 213 (06) 753-754
    CrossrefPubMedGoogle Scholar
  • 23 Abuhamad AZ, Chaoui R. First Trimester Ultrasound Diagnosis of Fetal Abnormalities. Vol. 2017. Beaverton: Ringgold, Inc; 2017
    Google Scholar
  • 24 American College of Obstetricians and Gynecologists. ACOG Committee opinion no. 550: maternal-fetal surgery for myelomeningocele. Obstet Gynecol 2013; 121 (01) 218-219
    CrossrefPubMedGoogle Scholar
  • 25 Morris RK, Khan KS, Kilby MD. Vesicoamniotic shunting for fetal lower urinary tract obstruction: an overview. Arch Dis Child Fetal Neonatal Ed 2007; 92 (03) F166-F168
    CrossrefPubMedGoogle Scholar
  • 26 Simpson LL. Society for Maternal-Fetal Medicine. Twin-twin transfusion syndrome. Am J Obstet Gynecol 2013; 208 (01) 3-18
    CrossrefPubMedGoogle Scholar
  • 27 Deprest JA, Nicolaides K, Gratacós E. Fetal surgery for congenital diaphragmatic hernia is back from never gone. Fetal Diagn Ther 2011; 29 (01) 6-17
    CrossrefPubMedGoogle Scholar
  • 28 Thomas AN, McCullough LB, Chervenak FA, Placencia FX. Evidence-based, ethically justified counseling for fetal bilateral renal agenesis. J Perinat Med 2017; 45 (05) 585-594
    CrossrefPubMedGoogle Scholar
  • 29 Chescheir NC, Cefalo RC. Prenatal diagnosis and caring. Womens Health Issues 1992; 2 (03) 123-132
    CrossrefPubMedGoogle Scholar
  • 30 Bourne S. The psychological effects of stillbirths on women and their doctors. J R Coll Gen Pract 1968; 16 (02) 103-112
    PubMedGoogle Scholar
  • 31 Kennell JH, Slyter H, Klaus MH. The mourning response of parents to the death of a newborn infant. N Engl J Med 1970; 283 (07) 344-349
    CrossrefPubMedGoogle Scholar
  • 32 Perinatal palliative care: ACOG COMMITTEE OPINION, Number 786. Obstet Gynecol 2019; 134 (03) e84-e89
    CrossrefPubMedGoogle Scholar
  • 33 Chitty LS, Barnes CA, Berry C. Continuing with pregnancy after a diagnosis of lethal abnormality: experience of five couples and recommendations for management. BMJ 1996; 313 (7055): 478-480
    CrossrefPubMedGoogle Scholar
  • 34 Hassed SJ, Miller CH, Pope SK, Murphy P, Quirk Jr JG, Cunniff C. Perinatal lethal conditions: the effect of diagnosis on decision making. Obstet Gynecol 1993; 82 (01) 37-42
    PubMedGoogle Scholar
  • 35 Schechtman KB, Gray DL, Baty JD, Rothman SM. Decision-making for termination of pregnancies with fetal anomalies: analysis of 53,000 pregnancies. Obstet Gynecol 2002; 99 (02) 216-222
    PubMedGoogle Scholar
  • 36 Saunders C. The hospice: its meaning to patients and their physicians. Hosp Pract (Off Ed) 1981; 16 (06) 93-108
    CrossrefPubMedGoogle Scholar
  • 37 Kübler-Ross E. On Death and Dying. New York: The Macmillan Company; 1969
    Google Scholar
  • 38 Drake H, Reid M, Marteau T. Attitudes towards termination for fetal abnormality: comparisons in three European countries. Clin Genet 1996; 49 (03) 134-140
    CrossrefPubMedGoogle Scholar
  • 39 Hoeldtke NJ, Calhoun BC. Perinatal hospice. Am J Obstet Gynecol 2001; 185 (03) 525-529
    CrossrefPubMedGoogle Scholar
  • 40 Longmore M. Neonatal nursing: palliative care guidelines. Nursing N Z 2016; 22 (04) 36
    PubMedGoogle Scholar
  • 41 NWIH Programme. On the implementation of the national standards for bereavement care following pregnancy loss and perinatal death. 2021 Paediatric Academic Unit, Cork, Ireland. Accessed Nov 18 2021 at: https://www.infantcentre.ie/wp-content/uploads/2021/08/HSE-National-Standards-for-Bereavement-Care.pdf
    PubMedGoogle Scholar
  • 42 Limbo R, Wool C, Carter B. Handbook of Perinatal and Neonatal Palliative Care: A Guide for Nurses, Physicians, and Other Health Professionals. 1 ed.. New York: Springer Publishing Company; 2019
    CrossrefGoogle Scholar