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.
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References
Kukora S, Gollehon N, Weiner G, Laventhal N. Prognostic accuracy of antenatal neonatology consultation. J Perinatol. 2017;37:27–31.
Racine E, Shevell MI. Ethics in neonatal neurology: when is enough, enough? Pediatr Neurol. 2009;40:147–55.
Lemmon ME, Donohue PK, Parkinson C, Northington FJ, Boss RD. Communication challenges in neonatal encephalopathy. Pediatrics 2016;138:1–9.
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.
Ghosh AK. Understanding medical uncertainty: a primer for physicians. J Assoc Physicians India. 2004;52:739–42.
Ridley S, Fisher M. Uncertainty in end-of-life care. Curr Opin Crit Care. 2013;19:642–7.
Dhawale T, Steuten LM, Deeg HJ. Uncertainty of physicians and patients in medical decision making. Biol Blood Marrow Transplant. 2017;23:865–9.
Christakis NA. Prognostication and bioethics. Daedalus. 1999;128:197–214.
Hoff L, Hermeren G. Identifying challenges to communicating with patients about their imminent death. J Clin Ethics. 2014;25:296–306.
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.
Christakis NA, Iwashyna TJ. Attitude and self-reported practice regarding prognostication in a national sample of internists. Arch Intern Med. 1998;158:2389–95.
Gordon EJ, Daugherty CK. ‘Hitting you over the head’: oncologists’ disclosure of prognosis to advanced cancer patients. Bioethics. 2003;17:142–68.
Smith AK, White DB, Arnold RM. Uncertainty–the other side of prognosis. N Engl J Med. 2013;368:2448–50.
Shevell MI, Majnemer A, Miller SP. Neonatal neurologic prognostication: the asphyxiated term newborn. Pediatr Neurol. 1999;21:776–84.
Gordon GH, Joos SK, Byrne J. Physician expressions of uncertainty during patient encounters. Patient Educ Couns. 2000;40:59–65.
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.
Keren G, Wu G. The Wiley Blackwell Handbook of Judgment and Decision Making, Vol. 2. New Jersey: Wiley; 2016.
Kurinczuk JJ, White-Koning M, Badawi N. Epidemiology of neonatal encephalopathy and hypoxic-ischaemic encephalopathy. Early Hum Dev. 2010;86:329–38.
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.
Ahearne CE, Boylan GB, Murray DM. Short and long term prognosis in perinatal asphyxia: an update. World J Clin Pediatr. 2016;5:67–74.
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.
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.
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.
Garros D, Rosychuk RJ, Cox PN. Circumstances surrounding end of life in a pediatric intensive care unit. Pediatrics. 2003;112:e371.
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.
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.
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.
Good MJDV American Medicine: The Quest for Competence. 1st edn. Berkeley: University of California Press; 1998.
Han PK, Klein WM, Arora NK. Varieties of uncertainty in health care: a conceptual taxonomy. Med Decis Making. 2011;31:828–38.
Timmermans S, Angell A. Evidence-based medicine, clinical uncertainty, and learning to doctor. J Health Soc Behav. 2001;42:342–59.
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.
Calnan M. Clinical uncertainty: is it a problem in the doctor-patient relationship? Sociol Health Illn. 1984;6:74–85.
Simpkin AL, Schwartzstein RM. Tolerating uncertainty - the next medical revolution? N Engl J Med. 2016;375:1713–5.
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.
Poupart J. La recherche qualitative: enjeux épistémologiques et méthodologiques. Montreal; Centre international de criminologie comparée, Université de Montréal; 1997.
Guest G, Bunce A, Johnson L. How many interviews are enough? An experiment with data saturation and variability. Field Methods. 2006;18:59–82.
Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15:1277–88.
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.
Natarajan N, Pardo AC. Challenges in neurologic prognostication after neonatal brain injury. Semin Perinatol. 2017;41:117–23.
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.
Parvez S, Abdel-Kader K, Song MK, Unruh M. Conveying uncertainty in prognosis to patients with ESRD. Blood Purif. 2015;39:58–64.
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.
Montgomery K. How doctors think: clinical judgment and the practice of medicine. New York: Oxford University Press; 2006.
Katz J. Why doctors don’t disclose uncertainty. Hastings Cent Rep. 1984;14:35–44.
Racine E, Dion MJ, Wijman CA, Illes J, Lansberg MG. Profiles of neurological outcome prediction among intensivists. Neurocrit Care. 2009;11:345–52.
Anspach RR. Deciding who lives: fateful choices in the intensive-care nursery. Berkeley: University of California Press; 1997.
Christakis NA. Death foretold: prophecy and prognosis in medical care. Chicago: University of Chicago Press; 2001.
Gillis J, Tobin B. How certain are you, doctor? Pediatr Crit Care Med. 2011;12:71–72.
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.
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.
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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
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DOI: https://doi.org/10.1038/s41372-018-0296-3