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Discontinuation of Life-Sustaining Therapy in Intensive Care: Ethical and Legal Issues

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Critical Care of Children with Heart Disease

Abstract

This updated chapter addresses ethically challenging situations that can occur in pediatric intensive care. It begins with an introduction to medical ethics, continues by reviewing key issues in decision-making in pediatrics, and finally considers recent changes in end-of-life care (EOLC). It has taken into account developments in palliative care provision and the growing availability of ethical and other support mechanisms in decision-making, including the greater involvement of children and their families in shared decision-making even in the toughest situations.

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References

  1. Namachivayam P, Shann F, Shekerdemian L, Taylor A, van Sloten I, Delzoppo C, Daffey C, Butt W. Three decades of pediatric intensive care: Who was admitted, what happened in intensive care, and what happened afterward. Pediat Crit Care Med. 2010;11(5):549–55.

    Google Scholar 

  2. Fraser LK, Miller M, Hain R, Norman P, Aldridge J, McKinney PA, Parslow RC. Rising national prevalence of life-limiting conditions in children in England. Pediatrics. 2012;129(4):e923–e929.

    Google Scholar 

  3. (i) Stanford Encyclopedia of Philosophy. Available at https://plato.stanford.edu/entries/medicine/ (accessed 03/18); (ii) Thompson RP, Upshur REG. Philosophy of Medicine: An Introduction. 1st ed. Routledge; 2017.

  4. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 7th ed. New York: Oxford University Press; 2012.

    Google Scholar 

  5. Brierley J, Larcher V. Adolescent autonomy revisited: clinicians need clearer guidance. J Med Ethics. 2016;42(8):482–485.

    Google Scholar 

  6. United Nations Convention on the Rights of the Child (UNCRC); 1989.

    Google Scholar 

  7. Paris JJ, Ahluwalia J, Cummings BM, Moreland MP, Wilkinson DJ.The Charlie Gard case: British and American approaches to court resolution of disputes over medical decisions. J Perinatol. 2017;37(12):1268–1271. https://doi.org/10.1038/jp.2017.138. Epub 2017 Oct 19.

  8. (i) Gillam L. Children’s bioethics and the zone of parental discretion. Monash Bioeth Rev. 2010;20(2):09.1–09.3. (ii) Birchley G. The harm threshold and parents’ obligation to benefit their children. J Med Ethics. 2016;42(2):123–126.

    Google Scholar 

  9. An Official ATS/AACN/ACCP/ESICM/SCCM Policy Statement: Responding to Requests for Potentially Inappropriate Treatments in Intensive Care Units. Am J Respir Crit Care Med. 2015;191(11):1318–1330.

    Google Scholar 

  10. Larcher V, Turnham H, Brierley J. Medical Innovation in a Children’s Hospital: ‘Diseases desperate grown by desperate appliance are relieved, or not at all’. Bioethics. 2018;32(1):36–42.

    Google Scholar 

  11. Sprung CL. The importance of religious affiliation and culture on end-of-life decisions in European intensive care units. Intensive Care Med. 2007:33:1732.

    Google Scholar 

  12. Brierley J, Larcher V. Emergency research in children: options for ethical recruitment. J Med Ethics. 2011;37(7):429–432.

    Google Scholar 

  13. Riling DA, Hofmann KH, Deshler J. Family-centered care in the pediatric intensive care unit. In: Fuhrman BP, Zimmerman J, eds. Pediatric Critical Care. 3rd ed. Philadelphia, PA: Mosby Elsevier; 2006:106–116.

    Google Scholar 

  14. Coombs M, Puntillo KA, Franck LS, Scruth EA, Harvey MA, Swoboda SM, Davidson JE. Implementing the SCCM family-centered care guidelines in critical care nursing practice. AACN Adv Crit Care. 2017 Summer;28(2):138–147.

    Google Scholar 

  15. Riling DA, Hofmann KH, Deshler J. Family-centered care in the pediatric intensive care unit. In: Fuhrman BP, Zimmerman J, eds. Pediatric Critical Care. 3rd ed. Philadelphia, PA: Mosby Elsevier; 2006:106–116.

    Google Scholar 

  16. Shields L, Pratt J, Davis LM, Hunter J. Family-centred care for children in hospital. Cochrane Database Syst Rev. 2007;(1):CD004811.

    Google Scholar 

  17. (8) and (ii) Breuner C, Moreno M. Approaches to the difficult patient/parent encounter. Pediatrics 2011;127:163.

    Google Scholar 

  18. Larcher V, Craig F, Bhogal K, Wilkinson D, Brierley J; Royal College of Paediatrics and Child Health. Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice. Arch Dis Child. 2015;100 Suppl 2:s3–s23.

    Google Scholar 

  19. Phipps LM, Bartke CN, Spear DA, et al. Assessment of parental presence during bedside pediatric intensive care unit rounds: effect on duration, teaching, and privacy. Pediatr Crit Care Med. 2007;8:220–224.

    Google Scholar 

  20. ESPNIC Rights of the Child for critically ill children & adaptation for ICU. Available at: http://espnic-online.org/Education/Standards-and-Guidelines. Accessed 03/18.

  21. Phipps LM, Bartke CN, Spear DA, et al. Assessment of parental presence during bedside pediatric intensive care unit rounds: effect on duration, teaching, and privacy. Pediatr Crit Care Med. 2007;8:220–224.

    Google Scholar 

  22. Muething SE, Kotagal UR, Schoettker PJ, Gonzalez Del Rey J, DeWitt TG. Family-centred bedside rounds: a new approach to patient care and teaching. Paediatrics. 2007;119:829–832.

    Google Scholar 

  23. Maxton FJ. Parental presence during resuscitation in the PICU: the parents’ experience. J Clin Nurs. 2008;17:3168–3176.

    Google Scholar 

  24. Truog RD, Meyer EC, Burns JP. Towards interventions to improve end-of-life care in the pediatric intensive care unit. Crit Care Med. 2006;34:S373–S377.

    Google Scholar 

  25. Laddie J, Craig F, Brierley J, Kelly P, Bluebond-Langner M. Withdrawal of ventilatory support outside the intensive care unit: guidance for practice. Arch Dis Child. 2014;99(9):812–816.

    Google Scholar 

  26. Griffiths B, Sebire N, Brierley J. Learning from investigation after death. Ped Crit Care Med. 2018:08;19(8S Suppl 2):S72–S78.

    Google Scholar 

  27. Norman P, Fraser L. Prevalence of life-limiting conditions in children and young people in England: time trends by area type. Health Place. 2014;26:171–179. https://doi.org/10.1016/j.healthplace.2014.01.002. Epub 2014 Jan 15.

  28. Fraser LK, Parslow R. Children with life-limiting conditions in paediatric intensive care units: a national cohort, data linkage study. Arch Dis Child. 2018;103:540–547.

    Google Scholar 

  29. Devictor DJ, Latour JM; EURYDICE II study group. Forgoing life support: how the decision is made in European pediatric intensive care units. Intensive Care Med. 2011;37(11):1881–1887.

    Google Scholar 

  30. Truog RD, Meyer EC, Burns JP. Towards interventions to improve end-of-life care in the pediatric intensive care unit. Crit Care Med. 2006;34:S373–S377.

    Google Scholar 

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du Pré, P., Tissières, P., Brierley, J. (2020). Discontinuation of Life-Sustaining Therapy in Intensive Care: Ethical and Legal Issues. In: Munoz, R., Morell, V., da Cruz, E., Vetterly, C., da Silva, J. (eds) Critical Care of Children with Heart Disease . Springer, Cham. https://doi.org/10.1007/978-3-030-21870-6_53

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  • DOI: https://doi.org/10.1007/978-3-030-21870-6_53

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  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-030-21869-0

  • Online ISBN: 978-3-030-21870-6

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