Advertisement

Critical Aspects of Decision-Making and Grieving After Diagnosis of Fetal Anomaly

  • Judith L. M. McCoydEmail author

Abstract

After the diagnosis of a fetal anomaly, women and their partners must make difficult decisions about whether to (1) plan to raise the child with the condition/s, (2) carry the pregnancy for as long as possible and pursue palliative care or perinatal hospice if the condition is life threatening, (3) relinquish the child for adoption, or (4) terminate the pregnancy. The decisions are highly contextual, driven by factors such as the woman’s religious views, beliefs about quality of life, availability biases, access to support networks (both formal and informal), and the woman’s sense of her own ability to cope with the selected outcome. This chapter delineates factors involved with decision-making and also addresses how grief is a part of the outcome for any of these decisions. Women benefit when they are helped to recognize that the diagnosis of a fetal anomaly (or multifetal pregnancy that is likely to have a poor outcome) is where the grief begins and that their decisions are all likely to lead to a situation where they must mourn the imagined, healthy child they intended to have. Strategies for providing care for women and their partners after fetal diagnosis are identified.

Keywords

Prenatal diagnosis Decision-making Abortion Grief Selective reduction Perinatal hospice 

References

  1. A loving choice: making an adoption plan for a child with Down Syndrome. http://www.ndsan.org/adoption-process/birth-parents/. Accessed 2 June 2014.
  2. Abba K, Byrne P, Horton S, Lloyd-Williams M. Interventions to encourage discussion of end-of-life preferences between members of the general population and the people closest to them – a systematic literature review. BMC Palliat Care. 2013;2013:12(40). doi: 10.1186/1472-684X-12-40.Google Scholar
  3. ACOG Practice Bulletin. Screening for fetal chromosomal abnormalities. Obstet Gynecol. 2007;109(1):217–27.CrossRefGoogle Scholar
  4. Beck M. Expecting Adam. New York, NY: Berkley Books; 1999/2000.Google Scholar
  5. Bekker HL, Hewison J, Thornton JG. Understanding why decision aids work: linking process with outcome. Pat Ed Counselor. 2003;50:323–9. doi: 10.1016/S0738-3991(03)00056-9.CrossRefGoogle Scholar
  6. Bekker HL, Hewison J, Thornton JG. Applying decision analysis to facilitate informed decision making about prenatal diagnosis for Down syndrome: a randomized controlled trial. Prenat Diagn. 2004;24:265–75. doi: 10.1002/pd.851.CrossRefPubMedGoogle Scholar
  7. Bianchi DW, Parker RL, Wentworth J, Madankumar R, Saffer C, Das AF, Craig JA, Chudova DI, Devers PL, Jones KW, Oliver K, Rava RP, Sehnert AJ. DNA sequencing versus standard prenatal aneuploidy screening. N Engl J Med. 2014;370(9):799–808. doi: 10.1056/NEJMoa1311037.CrossRefPubMedGoogle Scholar
  8. Botti S, Orfalik K, Iyengar S. Tragic choices: autonomy and emotional responses to medical decisions. J Consum Res. 2009;36(3):337–52.CrossRefGoogle Scholar
  9. Britt D, Evans M. Sometimes doing the right thing sucks: frame combinations and multi-fetal pregnancy reduction decision difficulty. Soc Sci Med. 2007;65(11):2342–56.CrossRefPubMedGoogle Scholar
  10. Brom L, Hopmans W, Pasman HW, Timmermans DM, Widdershoven GM, Onwuteaka-Philipsen BD. Congruence between patients' preferred and perceived participation in medical decision-making: a review of the literature. BMC Med Inform Decis Mak. 2014;14(1):1–27. doi: 10.1186/1472-6947-14-25.CrossRefGoogle Scholar
  11. Bryant L, Hewison JD, Green JM. Attitudes towards prenatal diagnosis and termination in women who have a sibling with Down’s syndrome. J Reprod Infant Psychol. 2005;23:181–98.CrossRefGoogle Scholar
  12. Choi H, Van Riper M, Thoyre S. Decision making following a prenatal diagnosis of Down syndrome: an integrative review. J Midwifery Womens Health. 2012;57(2):156–64. doi: 10.1111/j.1542-2011.2011.00109.x.CrossRefPubMedGoogle Scholar
  13. Dormandy E, Michie S, Hooper R, Marteau TM. Low uptake of prenatal screening for Down syndrome in minority ethnic groups and socially deprived groups: a reflection of women’s attitudes or a failure to facilitate informed choices. Int J Epidemiol. 2005;34:146–352. 10.109.1093.Google Scholar
  14. Durand M, Wegwarth O, Boivin J, Elwyn G. Design and usability of heuristic-based deliberation tools for women facing amniocentesis. Health Exp. 2011;15(1):32–48. doi: 10.1111/j.1369-7625.2010.00651.x.CrossRefGoogle Scholar
  15. Ebaugh HRF. Becoming an ex: the process of role exit. Chicago IL: U of Chicago Press; 1988.Google Scholar
  16. English NK, Hessler KL. Prenatal birth planning for families of the imperiled newborn. J Obstet Gynecol Neonatal Nurs. 2013;42(3):390–9. doi: 10.1111/1552-6909.12031.CrossRefPubMedGoogle Scholar
  17. Evans MI, Britt DW. Fetal reduction. Sem Perinatol. 2005;29(5):321–9.CrossRefGoogle Scholar
  18. Farrell J, Howell L. An overview of surgical techniques, research trials, and future directions of fetal therapy. J Obstet Gynecol Neonatal Nurs. 2012;41(3):419–25. doi: 10.1111/j.1552-6909.2012.01356.x.CrossRefPubMedGoogle Scholar
  19. Farrelly E, Cho M, Erby L, Roter D, Stenzel A, Ormond K. Genetic counseling for prenatal testing: where is the discussion about disability? J Gen Couns. 2012;21(6):814–24. doi: 10.1007/s10897-012-9484-z.CrossRefGoogle Scholar
  20. Garcia E, Timmermans DRM, van Leeuwen E. Reconsidering prenatal screening: an empirical-ethical approach to understand moral dilemmas as a question of personal preferences. J Med Ethics. 2009;35:410–4. doi: 10.1136/jme.2008.026880.CrossRefPubMedGoogle Scholar
  21. Geerinck-Vercammen CR, Kanhai HHH. Coping with termination of pregnancy for fetal abnormality in a supportive environment. Prenat Diagn. 2003;23:543–8.CrossRefPubMedGoogle Scholar
  22. Gigerenzer G. Gut feelings: the intelligence of the unconscious. New York: Viking; 2007.Google Scholar
  23. Glidden LM. Adopting children with developmental disabilities: a long term perspective. Fam Relat. 2000;49(4):397–405.CrossRefGoogle Scholar
  24. Goff BSN, Springer N, Foote LC, Frantz C, Peak M, Tracy C, Veh T, Bentley GE, Cross KA. Receiving the initial Down syndrome diagnosis: a comparison of prenatal and postnatal parent group experiences. Intellect Dev Disabil. 2013;51:446–57. doi: 10.1352/1934-9556-51.6.446.CrossRefGoogle Scholar
  25. Gould J. Disability: breaking down the barriers to child placement – report of BAAF Health Group Conference. Adopt Foster. 2010;34(4):79–82. doi: 10.1177/030857591003400412.CrossRefGoogle Scholar
  26. Green SE. “We’re tired, not sad”: benefits and burdens of mothering a child with a disability. Soc Sci Med. 2007;64:150–63.CrossRefPubMedGoogle Scholar
  27. Haidt J. The emotional dog and its rational tail: a social intuitionist approach to moral judgment. Psychol Rev. 2001;108(4):814–34. doi: 10.1037//0033-295X.108.4.814.CrossRefPubMedGoogle Scholar
  28. Helm DT, Miranda S, Chedd NA. Prenatal diagnosis of Down syndrome: mothers’ reflections on supports needed from diagnosis to birth. Ment Retard. 1998;36:55–61.CrossRefPubMedGoogle Scholar
  29. Jackson JM, Crider KS, Cragan JD, Rasmussen SA, Olney RS. Frequency of prenatal cytogenetic diagnosis and pregnancy outcomes by maternal race-ethnicity, and the effect on the prevalence of trisomy 21, Metropolitan Atlanta, 1996–2005. Am J Med Genet A. 2014;164A(1):70–6. doi: 10.1002/ajmg.a.36247.CrossRefPubMedGoogle Scholar
  30. Kahneman D, Slovic P, Tversky A. Judgment under uncertainty: Heuristics and biases. New York: Cambridge University Press; 1982.CrossRefGoogle Scholar
  31. Keefe-Cooperman K. A comparison of grief as related to miscarriage and termination for fetal anomaly. OMEGA. 2004/5;50(4):281–300.Google Scholar
  32. Kerns J, Vanjani R, Freedman L, Meckstroth K, Drey EA, Steinauer J. Women’s decision making regarding choice of second trimester termination method for pregnancy complications. Intl J Gynecol Obstet. 2012;116:244–8. doi: 10.1016/j.ijgo.2011.10.016.CrossRefGoogle Scholar
  33. Kersting A, Dorsch M, Kreulich C, Klockenbusch W. Coping with termination of pregnancy for fetal abnormality. Prenat Diagn. 2004;24:70–2. doi: 10.1002/pd.770.CrossRefPubMedGoogle Scholar
  34. Kessler S. Psychological aspects of genetic counseling. VII. Thoughts on directiveness. J Gen Couns. 1997;1(1):9–17.CrossRefGoogle Scholar
  35. Klass D, Silverman PR, Nickman SL. Continuing bonds: new understandings of grief. Philadelphia, PA: Taylor & Francis; 1996.Google Scholar
  36. Korenromp MJ, Iedema-Kuiper HR, Van Spijker HG, Christiaens GGML, Bergsma J. Termination of pregnancy on genetic grounds; coping with grieving. J Psychosom Obstet Gynecol. 1992;13:93–105.CrossRefGoogle Scholar
  37. Kumar A, Hessini L, Mitchell EMH. Conceptualising abortion stigma. Cult Health Sex. 2009;11(6):625–39. doi: 10.1080/13691050902842741.CrossRefPubMedGoogle Scholar
  38. Ladd-Taylor M, Umansky L, editors. “Bad” mothers: the politics of blame in twentieth century America. New York, NY: New York University Press; 1998.Google Scholar
  39. Lafarge C, Mitchell K, Fox P. Perinatal grief following a termination of pregnancy for foetal abnormality: the impact of coping strategies. Prenat Diagn. 2013;33:1173–82. doi: 10.1002/pd.4218.CrossRefPubMedGoogle Scholar
  40. Lathrop A, Vandevusse L. Affirming motherhood: validation and invalidation in women's perinatal hospice narratives. Birth (Berkeley, CA). 2011;38(3):256–65. doi: 10.1111/j.1523-536X.2011.00478.x.CrossRefGoogle Scholar
  41. Lawson KL. Contemplating selective reproduction: a subjective appraisal of parenting a child with a disability. J Reprod Infant Psychol. 2001;19:73–82. doi: 10.1080/02646830020032400.CrossRefGoogle Scholar
  42. Lyus R, Creed K, Fisher J, McKeon L. Termination of pregnancy for fetal abnormality. Brit J Midwifery. 2014;22(5):332–7.CrossRefGoogle Scholar
  43. MacInnes MD. One's enough for now: children, disability, and the subsequent childbearing of mothers. J Marriage Fam. 2008;70(3):758–71.CrossRefPubMedCentralPubMedGoogle Scholar
  44. Major B, Gramzow RH. Abortion as stigma: cognitive and emotional implications of concealment. J Pers Soc Psychol. 1999;77:735–45.CrossRefPubMedGoogle Scholar
  45. Markens S, Browner CH, Press N. “Because of the risks”: how US pregnant women account for refusing prenatal screening. Soc Sci Med. 1999;49:359–69.CrossRefPubMedGoogle Scholar
  46. Marteau T. Towards informed decisions about prenatal testing: a review. Prenat Diagn. 1995;15(13):1215–26.CrossRefPubMedGoogle Scholar
  47. McCarthy H. Parent burn out. 2007. http://www.rainbowkids.com/ExpertArticleDetails.aspx?id=276&title=Parent Burn-out. Accessed June 13 2014.
  48. McCoyd JLM. Pregnancy Interrupted: non-normative loss of a desired pregnancy after termination for fetal anomaly. Unpublished dissertation, Bryn Mawr (PA): Bryn Mawr College; 2003. p. 281. Available from: Proquest, Ann Arbor, MI; 3088602.Google Scholar
  49. McCoyd JLM. Pregnancy interrupted: loss of a desired pregnancy after diagnosis of fetal anomaly. J Psychosom Obstet Gynecol. 2007;28(1):37–48.CrossRefGoogle Scholar
  50. McCoyd JLM. “I’m not a saint”: burden assessment as an unrecognized factor in prenatal decision making. Qual Health Res. 2008;18(11):1489–500.CrossRefPubMedGoogle Scholar
  51. McCoyd JLM. Discrepant feeling rules and unscripted emotion work: women terminating desired pregnancies due to fetal anomaly. Am J Orthopsychol. 2009a;79(4):441–51.CrossRefGoogle Scholar
  52. McCoyd JLM. What do women want?: experiences and reflections of women after prenatal diagnosis and termination for anomaly. Health Care Women Int. 2009b;30(6):507–35.CrossRefPubMedGoogle Scholar
  53. McCoyd JLM. Women in no man’s land: the U.S. abortion debate and women terminating desired pregnancies due to fetal anomaly. Br J Soc Work. 2010;40:133–53. doi: 10.1093/bjsw/bcn080.CrossRefGoogle Scholar
  54. McCoyd JLM. Preparation for prenatal decision-making: a baseline of knowledge and reflection in women participating in prenatal screening. J Psychosom Obstet Gynecol. 2013;34(1):3–8.CrossRefGoogle Scholar
  55. McCoyd JLM, Akincigil A, Peak EH. Pediatric disability and caregiver separation. J Fam Soc Work. 2010;13(3):251–68.CrossRefGoogle Scholar
  56. Miller SM. Monitoring and blunting: validation of a questionnaire to assess styles of information seeking under threat. J Pers Soc Psychol. 1987;52(2):345–53.CrossRefPubMedGoogle Scholar
  57. Miller C, Hewison J, Morley S. A comparison of decisions about prenatal diagnosis and pre-implantation genetic diagnosis. J Reprod Infant Psychol. 2012;30(4):377–87. doi: 10.1080/02646838.2012.725128.CrossRefGoogle Scholar
  58. Natoli JL, Ackerman DL, McDermott S, Edwards J. Prenatal diagnosis of Down syndrome: a systematic review of termination rates (1995–2011). Prenat Diagn. 2012;32:142–53. doi: 10.1002/pd.2910.CrossRefPubMedGoogle Scholar
  59. Norton ME, Brar H, Weiss J, Karimi A, Laurent LC, Caughey AB, et al. Non-invasive chromosomal evaluation (NICE) study: results of a multicenter, prospective cohort study for detection of trisomy 21 and trisomy 18. Am J Obstet Gynecol. 2012;207:1371–8.CrossRefGoogle Scholar
  60. Olshansky S. Chronic sorrow: a response to having a defective child. In: Nolen R, editor. Counselling parents of the mentally retarded. Springfield, IL: Charles C Thomas; 1970.Google Scholar
  61. Orfali K. Parental role in medical decision-making: fact or fiction? A comparative study of ethical dilemmas in French and American neonatl intensive care units. Soc Sci Med. 2004;58:2009–22. doi: 10.1016/S0277-9536(03)00406-4.CrossRefPubMedGoogle Scholar
  62. Parens E, Asch A. Prenatal testing and disability rights. Washington, D.C.: Georgetown University Press; 2000.Google Scholar
  63. Parens E, Asch A. Disability rights critique of prenatal genetic testing: reflections and recommendations. Ment Retard Dev Disabil Res Rev. 2003;9(1):40–7.Google Scholar
  64. Parker AM, Bruine de Bruine W, Fischoff B. Maximizers versus satisficers: decision-making styles, competence, and outcomes. Judge Dec Mak. 2007;2:342–50.Google Scholar
  65. Paulus MP, Yu AJ. Emotion and decision-making: affect-driven belief systems in anxiety and depression. Trends Cogn Sci. 2012;16(9):476–82. doi: 10.1016/jtics.2012.07.009.CrossRefPubMedCentralPubMedGoogle Scholar
  66. Pieterse A, de Vries M. On the suitability of fast and frugal heuristics for designing values clarification methods in patient decision aids: a critical analysis. Health Exp. 2011;16:73–9. doi: 10.1111/j.1369-7625.2011.00720.x.CrossRefGoogle Scholar
  67. Rapp R. Refusing prenatal diagnosis: the meanings of bioscience in a multicultural world. Sci Technol Hum Val. 1998;23(1):45–70.CrossRefGoogle Scholar
  68. Rapp R. Testing women: testing the fetus. New York: Routledge Press; 2000.Google Scholar
  69. Rasmussen SA, Wong LY, Yang Q, May KM, Friedman JM. Population-based analyses of mortality in trisomy 13 and trisomy 18. Pediatrics. 2003;111(4 Pt 1):777–84.CrossRefPubMedGoogle Scholar
  70. Sandelowski M, Jones LJ. Healing fictions’: stories of choosing in the aftermath of the detection of fetal anomalies. Soc Sci Med. 1996;42:351–61.CrossRefGoogle Scholar
  71. Santalahti P, Hemminki E, Latikka A, Ryynaen M. Women’s decision-making in prenatal screening. Soc Sci Med. 1998;46(8):1067–76.CrossRefPubMedGoogle Scholar
  72. 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;99:216–22.CrossRefPubMedGoogle Scholar
  73. Schild S, Black RB. Social work and genetics. New York: Haworth; 1984.Google Scholar
  74. Schwartz B, Ward A, Monterosso J, Lyubomirsky S, White K, Lehman DR. Maximizing versus satisficing: happiness is a matter of choice. J Pers Soc Psychol. 2002;83:1178–97.CrossRefPubMedGoogle Scholar
  75. Skotko B. Prenatally diagnosed Down syndrome: mothers who continued their pregnancies evaluate their health care providers. Am J Obstet Gynecol. 2005;192(3):670–7. doi: 10.1016/j.ajog.2004.11.001.CrossRefPubMedGoogle Scholar
  76. St-Jacques S, Grenier S, Charland M, Forest J-C, Rousseau F, Légaré F. Decisional needs assessment regarding Down syndrome prenatal testing: a systematic review of the perceptions of women, their partners and health professionals. Prenat Diagn. 2008;28(13):1183–203. http://dx.doi.org/10.1002/pd.2059.CrossRefPubMedGoogle Scholar
  77. Theut SK, Pedersen FA, Zaslow MJ, Cain RL, Rabinovich BA, Morihisa JM. Perinatal loss and bereavement. Am J Psychol. 1989;146(5):635–9.CrossRefGoogle Scholar
  78. Toedter L, Lasker J, Alhadeff J. The perinatal grief scale: development and initial validation. Am J Orthopsychol. 1988;58:435–49.CrossRefGoogle Scholar
  79. Vailly J. Genetic testing, birth, and the quest for health. Sci Technol Hum Val. 2014;39(3):374–96. doi: 10.1177/0162243913509413.CrossRefGoogle Scholar
  80. Vitez M. Knowing her baby will die, she chooses to give birth. The Philadelphia Inquirer. 2001: A1–A14.Google Scholar
  81. Walter CA, McCoyd JLM. Grief and loss across the lifespan: a biopsychosocial approach. New York: Springer Publishing; 2009.Google Scholar
  82. Zamora IJ, Ethun CJ, Evans LM, Olutoye OO, Ivey RT, Haeri S, et al. Maternal morbidity and reproductive outcomes related to fetal surgery. J Pediatr Surg. 2013;48(5):951–5. doi: 10.1016/j.jpedsurg.2013.02.010.CrossRefPubMedGoogle Scholar
  83. Zeanah CH, Dailey J, Rosenblatt MJ, Saller N. Do women grieve following termination of pregnancy for fetal anomalies? A controlled investigation. Obstet Gynecol. 1993;82:270–5.PubMedGoogle Scholar
  84. Zuckoff M. Choosing Naia: a family’s journey. Boston: Beacon; 2002.Google Scholar

Copyright information

© Springer International Publishing Switzerland 2015

Authors and Affiliations

  1. 1.School of Social WorkRutgers UniversityCamdenUSA

Personalised recommendations