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Managing Ethically Complex Issues in Critically Ill Patients—A Neonatal Perspective

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Abstract

Ethically complex issues are commonly encountered in critically ill patients in intensive care units and usually relate to disagreements about care in such high risk situations. Because the clinical course is often uncertain and unpredictable, serious disagreements about the plan and priorities of care occur. This is presented simplistically as a conflict between the (surrogate) autonomy of the family members and the physician (health care professional) authority, in promoting the patient’s best interests. The ethical issues emerge only when discussion includes broader concerns about morbidity, mortality, and meaning to family and the hospital staff. We review the theoretical ethical basis of decision-making in such situations in the context of neonatal intensive care units and recommend that the physician focuses on the professional role of advocate for the infant’s best interests. Reflective conversations with family, including openness about uncertainty and willingness to re-evaluate care plans, are essential to maintain trust. This mediation approach supports different moral views in an atmosphere of mutual respect. Expert ethics assistance early on in high risk cases is recommended. We suggest that this be provided by an ethics consulting service readily available to the staff for optimizing care and preventing the development of crises.

The secret in caring for the patient is to care about the patient

—Francis W. Peabody MD 1925

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References

  1. Nuffield Council on Bioethics (2014) Critical care decisions in fetal and neonatal medicine: ethical issues. England, United Kingdom. http://nuffieldbioethics.org/wp-content/uploads/2014/07/CCD-web-version-22-June-07-updated.pdf. Accessed 21 Oct 2014

  2. Cuttini M, The EURONIC Study Group (2001) The European Union collaborative project on ethical decision making in Neonatal Intensive Care (EURONJC): findings from 11countries. J Clin Ethics 12:290–296

    CAS  PubMed  Google Scholar 

  3. Ryan AC, Byrne P, Kuhn S, Tyebkhan J (1993) No resuscitation and withdrawal of therapy in a neonatal and a pediatric intensive care unit in Canada. J Pediatr 123:534–538

    Article  CAS  PubMed  Google Scholar 

  4. Fontana MS, Farrell C, Gauvin F, Lacroix J, Janvier A (2013) Modes of death in pediatrics: differences in the ethical approach in neonatal and pediatric patients. J Pediatr 162:1107–1111

    Article  PubMed  Google Scholar 

  5. Verhagen EAA, Janvier A, Leuthner SR, Andrews B, Lagatta J, Bos AF et al (2009) Categorizing neonatal deaths: a cross-cultural study in the United States, Canada, and the Netherlands. J Pediatr 156:33–37

    Article  Google Scholar 

  6. McHaffie H, Cuttini M, Brölz-Voit LR, Mousty R, Duguet AM, Wennergren B, Benciolini P (1999) Withholding/withdrawing treatment from neonates: legislation and official guidelines across Europe. J Med Ethics 25:440–446

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  7. Wilkinson D, Thiele P, Watkins A, De Crespigny L (2012) Fatally flawed? A review and ethical analysis of lethal congenital malformations. BJOG 119:1302–1308

    Article  CAS  PubMed  Google Scholar 

  8. Lantos JD, Meadow W. (2009) Variation in treatment of infants born at the borderline of viability. Pediatrics 123:1588–1590

    Article  PubMed  Google Scholar 

  9. Janvier A, Watkins A (2013) Medical interventions for children with trisomy 13 and trisomy 18: what is the value of a short disabled life? Acta Paediatrica 102:1112–1117

    Article  PubMed  Google Scholar 

  10. Breeze AC, Lees CC, Kumar A, Missfelder-Lobos HH, Murdoch EM (2006) Palliative care for prenatally diagnosed lethal fetal abnormalities. Arch Dis Child Fetal Neonatal Ed 92:F56–F58

    Google Scholar 

  11. Partridge JC, Martinez AM, Nishida H et al (2005) International comparison of care for very low birth weight infants parents’ perceptions of counseling and decision-making. Pediatrics 116:e263–e271

    Article  PubMed  Google Scholar 

  12. Jefferies AL, Kirpalani HM, (2012) Canadian paediatric society, fetus and newborn committee. Management and counseling for anticipated extremely preterm birth. Paediatr Child Health 17:443–444

    PubMed Central  PubMed  Google Scholar 

  13. Pignotti MS, Donzelli G (2007) Perinatal care at the threshold of viability: an international comparison of practical guidelines for the treatment of extremely preterm births. Pediatrics 121:e193–e198

    Google Scholar 

  14. Janvier A, Barrington KJ, Aziz K, Lantos J (2008) Ethics ain’t easy: do we need simple rules for complicated ethical decisions? Acta Paediatr 97:402–406

    Article  PubMed  Google Scholar 

  15. Lee SK, McMillan DD, Ohlsson A et al (2000) Variations in practice and outcomes in the Canadian NICU network: 1996–1997. Pediatrics 106:1070–1079

    Article  CAS  PubMed  Google Scholar 

  16. Sauve RS, Robertson C, Etches P, Byrne PJ, Dayer-Zamora V (1998) Before viability: a geographically based outcome study of infants weighing 500 grams or less at birth. Pediatrics 101:438–445

    Article  CAS  PubMed  Google Scholar 

  17. Tyson JE, Parikh NA, Langer J, Green C, Higgins RD (2008) National institute of child health and human development neonatal research network. Intensive care for extreme prematurity moving beyond gestational age. N Engl J Med 358:1672–1681

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  18. Meadow W, Lagatta J, Andrews B et al (2008) Just in time: ethical implications of serial predications of death and morbidity for ventilated premature infants. Pediatrics 121:732–740

    Article  PubMed  Google Scholar 

  19. Croskerry P (2003) The importance of cognitive errors in diagnosis and strategies to minimize them. Acad Med 78:775–780

    Article  PubMed  Google Scholar 

  20. Haward MF, Murphy RO, Lorenz JM (2008) Message framing and perinatal decisions. Pediatrics 122:109–118

    Article  PubMed  Google Scholar 

  21. Hammerman C, Kornbluth E, Lavie 0, Zadka P, Adboulafia Y, Eidelman Al (1997) Decision-making in the critically ill neonate: cultural background versus individual life experiences. J Med Ethics 23:164–169

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  22. Marcello K, Lampron K, Stefano JL, Barrington KJ, Mackley AB, Janvier A (2011) Who’s best interest? The influence of family characteristics on perinatal decision-making. Pediatrics 127:e934–e939

    Article  Google Scholar 

  23. Paris JJ, Graham N, Schreiber MD, Goodwin M (2006) Has the emphasis on autonomy gone too far: insights from Dostoevsky on parental decision making in the NICU. Camb Q of Healthc Ethics 15:147–151

    Article  Google Scholar 

  24. Berwick D (2009) What ‘patient-centered’ should mean: confessions of an extremist. Health Affairs—Web Exclusive. Project HOPE—The People-to-People Health Foundation Inc.

    Google Scholar 

  25. Bell EF (2007) American academy of pediatrics committee on fetus and newborn; non-initiation or withdrawal of intensive care for high-risk newborns. Pediatrics 119:401–403

    Article  PubMed  Google Scholar 

  26. Hall D, Prochazka A, Fink A (2012) Informed consent for clinical treatment. CMAJ 184:533–540

    Article  PubMed Central  PubMed  Google Scholar 

  27. Beauchamp TL, Walters L (2003) The ‘four principles’ approach. In: Gillon R (ed) Principles of health care ethics. Wiley, New York, pp 3–12

    Google Scholar 

  28. Arango P (2011) Family centered care. Acad Pediatr 11:97–99

    Article  PubMed  Google Scholar 

  29. Nicholas D, Hendson L, Reis M (2014) Connection versus disconnection: examining culturally competent care in the neonatal intensive care unit. Soc Work Health Care 53:135–155

    Article  PubMed  Google Scholar 

  30. Berger TM (2010) Decisions in the Gray Zone: evidence-based or culture-based? J Pediatr 156:7–9

    Article  PubMed  Google Scholar 

  31. Pantilat S (2009) Communicating with seriously ill patients: better words to say. JAMA 201:1279–1281

    Article  Google Scholar 

  32. Buckman R, Tulsky J, Rodin G (2011) Empathic responses in clinical practice: intuition or tuition? CMAJ 183:569–571

    Article  PubMed Central  PubMed  Google Scholar 

  33. Silverman W (2005) Russian roulette in the delivery room. Pediatrics 115:192–193

    PubMed  Google Scholar 

  34. Detsky J, Zlotnik SR (2013) Incentives to increase patient satisfaction: are we doing more harm than good? CMAJ 185:1999–2000

    Google Scholar 

  35. Johnson AR, Siegler M, Winslade WJ (1998) Clinical ethics, 4th edn. McGraw-Hill, New York

    Google Scholar 

  36. McKneally M, Singer P (2001) Bioethics for clinicians: 25. Teaching bioethics in the clinical setting. CMAJ 164:1163–1167

    CAS  PubMed Central  PubMed  Google Scholar 

  37. Jordan MC (1998) Ethics manual. 4th edn. American College of Physicians. Ann Intern Med 128:576–594

    Article  Google Scholar 

  38. Paris JJ, Schreiber M, Elias-Jones A (2005) Resuscitation of the preterm infant against parental wishes. Arch Dis Child Fetal Neonatal Ed 90:F208–F210

    Google Scholar 

  39. Harrison H (2008) The offer they can’t refuse: parents and perinatal treatment decisions. Semin Fetal Neonatal Med 13:329–334

    Article  PubMed  Google Scholar 

  40. Lyren A, Ford P (2007) Special considerations for clinical ethics consultation in pediatrics: pediatric care provider as advocate. Clinl Pediatr 46:771–776

    Article  Google Scholar 

  41. Saint Thomas Aquinas. Summa Theologica

    Google Scholar 

  42. Slovic P, Baruch F, Lichtenstein S (1982) Why study risk perception? Risk Anal 2:83–93

    Article  Google Scholar 

  43. Malette vs. Shulman. Ontario court of appeal no. 29–88, March 30, 1990

    Google Scholar 

  44. E. (Mrs.) v. Eve. (1986) 2 S.C.R. 388

    Google Scholar 

  45. Zwolinski M (2013) Libertarianism. Internet encyclopedia of philosophy. Accessed 2 Nov 2013

    Google Scholar 

  46. Hermeren G (2012) The principle of proportionality revisited: interpretations and applications. Med Health Care Philos 15:373–382

    Article  PubMed  Google Scholar 

  47. Batton B (2010) Healing hearts. JAMA 304:1303–1304

    Article  CAS  PubMed  Google Scholar 

  48. http//www.ipfcc.org

  49. Kaveny C (2002) Conjoined twins and catholic moral analysis: extraordinary means and casuistically consistency Kennedy Inst Ethics J 12:115–140

    Article  PubMed  Google Scholar 

  50. MacRae S, Chidwick P, Berry S, Secker B, Hébert P, Zlotnik Shaul R, Faith K, Singer PA (2005) Clinical bioethics integration, sustainability, and accountability: the Hub and Spokes strategy. JME 31:256–261

    CAS  Google Scholar 

  51. Chochinov HM (2007) Dignity and the essence of medicine: the A, B, C, and D of dignity conserving care. BMJ 335:184–187

    Article  PubMed Central  PubMed  Google Scholar 

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Acknowledgments

We thank Carol Nahorniak for manuscript preparation and editorial assistance; and Patrizia Dambrosio in manuscript preparation.

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Authors and Affiliations

  1. Stollery Children’s Hospital, John Dossetor Health Ethics Centre, University of Alberta, 5–16 University Terrace, T6G 2T4, Edmonton, A, Canada

    Paul Byrne MB, ChB, FRCPC

  2. Stollery Children’s Hospitals & Mazankowski Alberta Heart Institute, John Dossetor Health Ethics Centre, University of Alberta, Edmonton, Canada

    Brendan Leier PhD

Authors
  1. Paul Byrne MB, ChB, FRCPC
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  2. Brendan Leier PhD
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Correspondence to Paul Byrne MB, ChB, FRCPC .

Editor information

Editors and Affiliations

  1. Department of Neonatal Paediatrics, KEM Hospital for Women, Perth, West Australia, Australia

    Sanjay Patole

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Byrne, P., Leier, B. (2015). Managing Ethically Complex Issues in Critically Ill Patients—A Neonatal Perspective. In: Patole, S. (eds) Management and Leadership – A Guide for Clinical Professionals. Springer, Cham. https://doi.org/10.1007/978-3-319-11526-9_18

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  • DOI: https://doi.org/10.1007/978-3-319-11526-9_18

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  • Publisher Name: Springer, Cham

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  • Online ISBN: 978-3-319-11526-9

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