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Chapter 6 - Fetal Therapy Choices: Uncertain and Emotional Decisions and the Doctor’s Role in Parental Decision-Making

from Section 1: - General Principles

Published online by Cambridge University Press:  21 October 2019

Mark D. Kilby
Affiliation:
University of Birmingham
Anthony Johnson
Affiliation:
University of Texas Medical School at Houston
Dick Oepkes
Affiliation:
Leids Universitair Medisch Centrum
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Summary

Making good decisions prospectively is difficult, especially when there is the perception that the stakes are high. There is often uncertainty regarding prognosis and emotions prevail both between a couple and in the interactions with their healthcare professional team. This is the case when parents have to decide about fetal therapy for congenital malformations and the health of their unborn child. Parents are usually unprepared for the often rare disease the fetus is found to have. Still in a state of shock, they receive a lot of detailed and difficult information, and need to decide whether to choose fetal therapy (which often carries risks of perinatal death or preterm birth as complications), expectant management, or sometimes the very difficult option of termination of pregnancy. The obstetrician or fetal medicine specialist aims to provide the parents with all the relevant factual information and to support them in their decision process.

Type
Chapter
Information
Fetal Therapy
Scientific Basis and Critical Appraisal of Clinical Benefits
, pp. 61 - 68
Publisher: Cambridge University Press
Print publication year: 2020

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References

Fry, JT, Frader, J. We want to do everything: how parents represent their experiences with maternal–fetal surgery online. J Perinatol. 2018; 38: 226.Google Scholar
McCoyd, JLM. Critical Aspects of Decision-Making and Grieving After Diagnosis of Fetal Anomaly. In Paley Galst, J and Verp, M, eds., Prenatal and Preimplantation Diagnosis. Cham: Springer, 2015.Google Scholar
Shapiro, DE, Boggs, SR, Melamed, BG, Graham-Pole, J. The effect of varied physician affect on recall, anxiety, and perceptions in women at risk for breast cancer: an analogue study. Health Psychol. 1992; 11: 6166.CrossRefGoogle ScholarPubMed
Kessels, PC. Patients’ memory for medical information J R Soc Med. 2003; 96: 219222.Google Scholar
Baron, J. Thinking and Deciding. Cambridge, UK: Cambridge University Press, 2008.Google Scholar
Marois, R, Ivanoff, J. Capacity limits of information processing in the brain. Trends Cogn Sci. 2005; 9: 296305.Google Scholar
Timmermans, DRM. Bounded Rationality and Emotions. In Kattan, MW, ed., Encyclopedia of Medical Decision Making. London: Sage Publications, 2009.Google Scholar
Williams, MV, Davis, T, Parker, RM, Weiss, BD. The Role of Health Literacy in Patient-Physician Communication. Fam Med. 2002; 34: 383–9.Google Scholar
Peters, E, Västfjäll, D, Slovic, P, Metz, CK, Mazzocco, K, Dickert, S. Numeracy and decision making. Psychol Sci. 2006; 17: 407–13.Google Scholar
Tiedens, LZ, Linton, S. Judgment under emotional certainty and uncertainty: The effects of specific emotions on information processing. J Pers Soc Psychol. 2001; 81: 973–88.CrossRefGoogle ScholarPubMed
Evans, JS. Dual-Processing Accounts of Reasoning, Judgment and Social Cognition. Annu Rev Psychol. 2008; 59: 255–78.Google Scholar
Gilovich, T, Griffin, D, Kahneman, D. Heuristics and Biases: The Psychology of Intuitive Judgment. Cambridge, UK: Cambridge University Press, 2002.Google Scholar
Schwartz, N, Clore, GL. Mood as information: 20 years later. Psychol Inq. 2003; 14: 296303.CrossRefGoogle Scholar
Loewenstein, G, Lerner, JS. The Role of Affect in Decision Making. In Davidson, RJ, Scherer, KR, Goldsmith, HH. Handbook of Affective Sciences. Oxford: Oxford University Press, 2003.Google Scholar
Van den Berg, M, Timmermans, DRM, Knol, D, Eijk, JTM, Smit, D, van Vugt, J, Van der Wal, G. Understanding pregnant women’s decision making concerning prenatal screening. Health Psychol. 2008; 27; 430–37.Google Scholar
Timmermans, DRM. Understanding and perception of risks about prenatal screening: interviews with pregnant women. Unpublished material.Google Scholar
Wang, XT. Emotions with reason: Resolving conflicts in risk preference. Cogn Emot. 2006; 20: 1132–52.CrossRefGoogle Scholar
Antiel, RM, Flake, AW, Collura, CA, Johnson, MP, Rintoul, NE, Lantos, JD, et al. Weighing the Social and Ethical Considerations of Maternal-Fetal Surgery. Pediatrics. 2017; 140: e20170608.CrossRefGoogle ScholarPubMed
Brown, SD, Feudtner, C, Truog, RD. Prenatal Decision-Making for Myelomeningocele: Can We Minimize Bias and Variability? Pediatrics. 2015; 136: 409–11.CrossRefGoogle ScholarPubMed
Clayman, ML, Bylund, CL, Chewning, B, Makoul, G. The impact of patient participation in health decisions within medical encounters: a systematic review. Med Decis Making. 2016; 36: 427–52.Google Scholar
Elwyn, G Laitner, S, Coulter, A, Walker, E, Watson, P, Thomson, R. Implementing shared decision making in the NHS. BMJ. 2010; 341: c5146.CrossRefGoogle ScholarPubMed
Elwyn, G, Edwards, A, Britten, N. Doing prescribing: how doctors can be more effective. BMJ. 2003; 327: 864–7.Google Scholar
O’Connor, A, Llewellyn-Thomas, H, Stacey, D. (2005). IPDAS Collaboration Background Document. International Patient Decision Aid Standards (IPDAS) Collaboration. http://ipdas.ohri.ca/IPDAS_Background.pdfGoogle Scholar
Stacey, D, Légaré, F, Col, NF, Bennett, CL, Barry, MJ, Eden, KB, et al. Decision aids for people facing health treatment or screening decisionsCochrane Database Syst Rev2014; 1: CD001431.Google Scholar
Blumenthal-Barby, JS, Krieger, H, Wei, A, Kim, D, Olutoye, OO, Cass, DL. Communication about maternal-fetal surgery for myelomeningocele and congenital diaphragmatic hernia: preliminary findings with implications for informed consent and shared decision-making. J Perinat Med. 2016; 44: 645–53.CrossRefGoogle ScholarPubMed
Timmermans, DRM, Oudhoff, J. Different formats for the Communication of risks: Verbal, numerical, and graphical formats. In Cochran, JJ, ed., Wiley Encyclopedia of Operations Research and Management Science. Hoboken: John Wiley & Sons, 2010.Google Scholar
Timmermans, DRM. The Role of Experience and Domain of Expertise in Using Numerical and Verbal Probability Terms in Medical Decisions. Med Decis Making. 1994; 14: 146–56.Google Scholar
Wallsten, TS, Budescu, DV, Zwick, R, Kemp, SM. Preferences and reasons for communicating probabilistic information in verbal or numerical terms. Bull Psychon Soc. 1993; 31: 135–38.Google Scholar
Gigerenzer, G, Gassmaier, W, Kurz-Milcke, E, Schwartz, LM, Woloshin, S. Helping doctors and patients make sense of health statistics. Psychol Sci Public Interest. 2007; 8: 5396.CrossRefGoogle ScholarPubMed
Slovic, P, Monahan, J, MacGregor, DG. Violence risk assessment and risk communication: the effects of using actual cases, providing instruction, and employing probability versus frequency formats. Law Hum Behav. 2000; 24: 271–96.Google Scholar
Lipkus, IM. Numeric, Verbal, and Visual Formats of Conveying Health Risks: Suggested Best Practices and Future Recommendations. Med Decis Making. 2007; 27: 696713.Google Scholar
Timmermans, D, Molewijk, B, Stiggelbout, A, Kievit, J. Different formats for communicating surgical risks to patients and the effect on choice of treatment. Patient Educ Couns. 2004; 54: 255–63.CrossRefGoogle ScholarPubMed
Galesic, M, Garcia-Retamero, R, Gigerenzer, G. Using icon arrays to communicate medical risks: Overcoming low numeracy. Health Psychol. 2009; 28: 210–16.Google Scholar
Fischhoff, B, Slovic, P, Lichtenstein, S. Knowing what you want: measuring labile values. In Wallsten, TS, ed., Cognitive Processes in Choice and Decision Behavior. Hillsdale, NJ: Lawrence Erlbaum Associates, 1980.Google Scholar
Montgomery, AA, Fahey, T. How do patients’ treatment preferences compare with those of clinicians? Qual Health Care. 2001; 10 (Suppl. I): i39–43.CrossRefGoogle ScholarPubMed
Stiggelbout, AM, De Haes, JCJM. Patient Preference for Cancer Therapy: An Overview of Measurement Approaches. J Clin Oncol. 2001; 19: 220–30.CrossRefGoogle ScholarPubMed
Wilson, T. Strangers to Ourselves: Discovering the Adaptive Unconscious. Cambridge, MA: Harvard University Press, 2002.Google Scholar
Robinson, A, Thomson, R. Variability in patient preferences for participating in medical decision making: implication for the use of decision support tools. Qual Health Care. 2001; 10 (Suppl. I): i34–38.CrossRefGoogle ScholarPubMed
Gibb, A, Entwistle, V. Shared decision making: trade-offs between narrower and broader conceptions. Health Expect. 2011; 14: 210–19.Google Scholar
Dijksterhuis, A. On making the right choice: the deliberation without attention effect. Science. 2006; 311: 1005–7.CrossRefGoogle ScholarPubMed

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