Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • Article
  • Published:

The complexity of physicians’ understanding and management of prognostic uncertainty in neonatal hypoxic-ischemic encephalopathy

Journal of Perinatology volume 39, pages 278–285 (2019)Cite this article

Subjects

Abstract

Objective

Prognosis of Hypoxic-Ischemic Encephalopathy (HIE) remains challenging and uncertain. This paper investigates how physicians understand and address the ethical challenges of prognostic uncertainty in the case of neonatal HIE, contextualized within the social science literature.

Study design

Semi-structured interviews were conducted with 12 Canadian neurologists and neonatologists, addressing their perspectives and clinical experiences concerning neonatal HIE prognostication. Interviews were analyzed using thematic content analysis.

Results

Participants unanimously recognized uncertainty in their prognostication. They identified several sources contributing to uncertainty in HIE prognostication, including etiology and underlying pathophysiologic mechanisms, statistical limitations, variable clinical data, the dynamic process of neurodevelopment, or the impact of hypothermia treatment. Unlike in some other literature, some physicians in this study talked about ways to render uncertainty explicit rather than hide it.

Conclusion

Results from this study support the call for recognition of the ubiquitous uncertainty surrounding this act in medical education and training.

This is a preview of subscription content, access via your institution

Access options

Buy this article

  • Purchase on Springer Link
  • Instant access to full article PDF
Buy now

Prices may be subject to local taxes which are calculated during checkout

Similar content being viewed by others

References

  1. Kukora S, Gollehon N, Weiner G, Laventhal N. Prognostic accuracy of antenatal neonatology consultation. J Perinatol. 2017;37:27–31.

    Article  CAS  Google Scholar 

  2. Racine E, Shevell MI. Ethics in neonatal neurology: when is enough, enough? Pediatr Neurol. 2009;40:147–55.

    Article  Google Scholar 

  3. Lemmon ME, Donohue PK, Parkinson C, Northington FJ, Boss RD. Communication challenges in neonatal encephalopathy. Pediatrics 2016;138:1–9.

  4. Fox RC. Medical uncertainty revisited. In: Albrecht GL, Fitzpatrick R, Scrimshaw SC, editors. Handbook of Social Studies in Health and Medicine. p. 409–25. London: SAGE Publications Ltd; 2000.

    Chapter  Google Scholar 

  5. Ghosh AK. Understanding medical uncertainty: a primer for physicians. J Assoc Physicians India. 2004;52:739–42.

    CAS  PubMed  Google Scholar 

  6. Ridley S, Fisher M. Uncertainty in end-of-life care. Curr Opin Crit Care. 2013;19:642–7.

    Article  Google Scholar 

  7. Dhawale T, Steuten LM, Deeg HJ. Uncertainty of physicians and patients in medical decision making. Biol Blood Marrow Transplant. 2017;23:865–9.

    Article  Google Scholar 

  8. Christakis NA. Prognostication and bioethics. Daedalus. 1999;128:197–214.

    PubMed  Google Scholar 

  9. Hoff L, Hermeren G. Identifying challenges to communicating with patients about their imminent death. J Clin Ethics. 2014;25:296–306.

    PubMed  Google Scholar 

  10. Lamont EB, Christakis NA. Complexities in prognostication in advanced cancer: “to help them live their lives the way they want to”. JAMA. 2003;290:98–104.

    Article  Google Scholar 

  11. Christakis NA, Iwashyna TJ. Attitude and self-reported practice regarding prognostication in a national sample of internists. Arch Intern Med. 1998;158:2389–95.

    Article  CAS  Google Scholar 

  12. Gordon EJ, Daugherty CK. ‘Hitting you over the head’: oncologists’ disclosure of prognosis to advanced cancer patients. Bioethics. 2003;17:142–68.

    Article  Google Scholar 

  13. Smith AK, White DB, Arnold RM. Uncertainty–the other side of prognosis. N Engl J Med. 2013;368:2448–50.

    Article  CAS  Google Scholar 

  14. Shevell MI, Majnemer A, Miller SP. Neonatal neurologic prognostication: the asphyxiated term newborn. Pediatr Neurol. 1999;21:776–84.

    Article  CAS  Google Scholar 

  15. Gordon GH, Joos SK, Byrne J. Physician expressions of uncertainty during patient encounters. Patient Educ Couns. 2000;40:59–65.

    Article  CAS  Google Scholar 

  16. Marcin JP, Pollack MM, Patel KM, Sprague BM, Ruttimann UE. Prognostication and certainty in the pediatric intensive care unit. Pediatrics. 1999;104(4 Pt 1):868–73.

    Article  CAS  Google Scholar 

  17. Keren G, Wu G. The Wiley Blackwell Handbook of Judgment and Decision Making, Vol. 2. New Jersey: Wiley; 2016.

  18. Kurinczuk JJ, White-Koning M, Badawi N. Epidemiology of neonatal encephalopathy and hypoxic-ischaemic encephalopathy. Early Hum Dev. 2010;86:329–38.

    Article  Google Scholar 

  19. Bell E, Rasmussen LA, Mazer B, Shevell M, Miller SP, Synnes A, et al. Magnetic resonance imaging (MRI) and prognostication in neonatal hypoxic-ischemic injury: a vignette-based study of Canadian specialty physicians. J Child Neurol. 2015;30:174–81.

    Article  Google Scholar 

  20. Ahearne CE, Boylan GB, Murray DM. Short and long term prognosis in perinatal asphyxia: an update. World J Clin Pediatr. 2016;5:67–74.

    Article  Google Scholar 

  21. Ferrand A, Gorgos A, Ali N, Payot A. Resilience rather than medical factors: how parents predict quality of life of their sick newborn. J Pediatr. 2018;200:64–70 e65.

    Article  Google Scholar 

  22. Wilkinson D. “We don’t have a crystal ball.” Neonatologists’ views on prognosis, magnetic resonance imaging and treatment withdrawal for infants with birth asphyxia. Monash Bioeth Rev. 2010;29:05 01–19.

    Google Scholar 

  23. Singh J, Lantos J, Meadow W. End-of-life after birth: death and dying in a neonatal intensive care unit. Pediatrics. 2004;114:1620–6.

    Article  Google Scholar 

  24. Garros D, Rosychuk RJ, Cox PN. Circumstances surrounding end of life in a pediatric intensive care unit. Pediatrics. 2003;112:e371.

    Article  Google Scholar 

  25. Garcia-Alix A, Arnaez J, Cortes V, Girabent-Farres M, Arca G, Balaguer A. Neonatal hypoxic-ischaemic encephalopathy: most deaths followed end-of-life decisions within three days of birth. Acta Paediatr. 2013;102:1137–43.

    Article  Google Scholar 

  26. Blumenthal-Barby JS, Loftis L, Cummings CL, Meadow W, Lemmon M, Ubel PA, et al. Should neonatologists give opinions withdrawing life-sustaining treatment? Pediatrics. 2016;138:e20162585.

  27. Wilkinson DJ. A life worth giving? The threshold for permissible withdrawal of life support from disabled newborn infants. Am J Bioeth. 2011;11:20–32.

    Article  Google Scholar 

  28. Good MJDV American Medicine: The Quest for Competence. 1st edn. Berkeley: University of California Press; 1998.

  29. Han PK, Klein WM, Arora NK. Varieties of uncertainty in health care: a conceptual taxonomy. Med Decis Making. 2011;31:828–38.

    Article  Google Scholar 

  30. Timmermans S, Angell A. Evidence-based medicine, clinical uncertainty, and learning to doctor. J Health Soc Behav. 2001;42:342–59.

    Article  CAS  Google Scholar 

  31. Rasmussen LA, Bell E, Racine E. A qualitative study of physician perspectives on prognostication in neonatal hypoxic ischemic encephalopathy. J Child Neurol. 2016;31:1312–9.

    Article  Google Scholar 

  32. Calnan M. Clinical uncertainty: is it a problem in the doctor-patient relationship? Sociol Health Illn. 1984;6:74–85.

    Article  Google Scholar 

  33. Simpkin AL, Schwartzstein RM. Tolerating uncertainty - the next medical revolution? N Engl J Med. 2016;375:1713–5.

    Article  Google Scholar 

  34. Han PK, Dieckmann NF, Holt C, Gutheil C, Peters E. Factors affecting physicians’ intentions to communicate personalized prognostic information to cancer patients at the end of life: an experimental vignette study. Med Decis Making. 2016;36:703–13.

    Article  Google Scholar 

  35. Poupart J. La recherche qualitative: enjeux épistémologiques et méthodologiques. Montreal; Centre international de criminologie comparée, Université de Montréal; 1997.

  36. Guest G, Bunce A, Johnson L. How many interviews are enough? An experiment with data saturation and variability. Field Methods. 2006;18:59–82.

    Article  Google Scholar 

  37. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15:1277–88.

    Article  Google Scholar 

  38. Volpe JJ, Inder TE, Darras BT, de Vries LS, du Plessis AJ, Neil J, et al. Volpe’s Neurology of the Newborn. Philadelphia: Elsevier Health Sciences; 2017.

  39. Natarajan N, Pardo AC. Challenges in neurologic prognostication after neonatal brain injury. Semin Perinatol. 2017;41:117–23.

    Article  Google Scholar 

  40. Racine E, Bell E, Farlow B, Miller S, Payot A, Rasmussen LA, et al. The ‘ouR-HOPE’ approach for ethics and communication about neonatal neurological injury. Dev Med Child Neurol. 2017;59:125–35.

    Article  Google Scholar 

  41. Parvez S, Abdel-Kader K, Song MK, Unruh M. Conveying uncertainty in prognosis to patients with ESRD. Blood Purif. 2015;39:58–64.

    Article  Google Scholar 

  42. Willems DL, Verhagen AA, van Wijlick E. Committee end-of-life decisions in severely ill newborns of royal dutch medical A. Infants’ best interests in end-of-life care for newborns. Pediatrics. 2014;134:e1163–1168.

    Article  Google Scholar 

  43. Montgomery K. How doctors think: clinical judgment and the practice of medicine. New York: Oxford University Press; 2006.

  44. Katz J. Why doctors don’t disclose uncertainty. Hastings Cent Rep. 1984;14:35–44.

    Article  CAS  Google Scholar 

  45. Racine E, Dion MJ, Wijman CA, Illes J, Lansberg MG. Profiles of neurological outcome prediction among intensivists. Neurocrit Care. 2009;11:345–52.

    Article  Google Scholar 

  46. Anspach RR. Deciding who lives: fateful choices in the intensive-care nursery. Berkeley: University of California Press; 1997.

  47. Christakis NA. Death foretold: prophecy and prognosis in medical care. Chicago: University of Chicago Press; 2001.

  48. Gillis J, Tobin B. How certain are you, doctor? Pediatr Crit Care Med. 2011;12:71–72.

    Article  Google Scholar 

  49. Cunningham BA, Bonham VL, Sellers SL, Yeh HC, Cooper LA. Physicians’ anxiety due to uncertainty and use of race in medical decision making. Med Care. 2014;52:728–33.

    Article  Google Scholar 

Download references

Acknowledgements

We thank Emily Bell for her assistance in adjudicating coding disagreements, and the members of the Pragmatic Health Ethics Research Unit for providing feedback about this project and this manuscript.

Funding

This research was funded by the Kids Brain Health Network. Eric Racine is additionally funded by a career award from the Fonds de recherches du Québec-Santé (FRQ-S) and M. Ariel Cascio by the SSHRC Banting Postdoctoral Fellowship and an Angelo-Pizzagalli Fellowship from the IRCM.

Author information

Author notes

  1. These authors contributed equally: M. Ariel Cascio, Amaryllis Ferrand.

Authors and Affiliations

  1. University of Vermont Medical Center, University of Vermont, Burlington, 111 Colchester Avenue, Burlington, VT, 05401, USA

    Lisa Anne Rasmussen

  2. Institut de recherches cliniques de Montréal, 110 Pine Avenue West, Montreal, QC, H2W1R7, Canada

    Lisa Anne Rasmussen, M. Ariel Cascio, Amaryllis Ferrand & Eric Racine

  3. McGill University, 845 Sherbrooke Street West, Montreal, QC, H3A 0G4, Canada

    Lisa Anne Rasmussen, M. Ariel Cascio, Michael Shevell & Eric Racine

  4. Université de Montréal, 2900, boul. Édouard-Montpetit, Montreal, QC, H3T 1J4, Canada

    Amaryllis Ferrand & Eric Racine

  5. McGill University Health Centre, 1001 Decarie Boulevard, B.RC. 6354, Montreal, QC, H4A 3J1, Canada

    Michael Shevell

Authors
  1. Lisa Anne Rasmussen
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. M. Ariel Cascio
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Amaryllis Ferrand
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Michael Shevell
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Eric Racine
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Eric Racine.

Ethics declarations

Conflict of interest

The authors declare that they have no conflict of interest.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Rasmussen, L.A., Cascio, M.A., Ferrand, A. et al. The complexity of physicians’ understanding and management of prognostic uncertainty in neonatal hypoxic-ischemic encephalopathy. J Perinatol 39, 278–285 (2019). https://doi.org/10.1038/s41372-018-0296-3

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/s41372-018-0296-3

Search

Advanced search

Quick links