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.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
References
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.
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.
(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.
Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 7th ed. New York: Oxford University Press; 2012.
Brierley J, Larcher V. Adolescent autonomy revisited: clinicians need clearer guidance. J Med Ethics. 2016;42(8):482–485.
United Nations Convention on the Rights of the Child (UNCRC); 1989.
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.
(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.
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.
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.
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.
Brierley J, Larcher V. Emergency research in children: options for ethical recruitment. J Med Ethics. 2011;37(7):429–432.
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.
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.
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.
Shields L, Pratt J, Davis LM, Hunter J. Family-centred care for children in hospital. Cochrane Database Syst Rev. 2007;(1):CD004811.
(8) and (ii) Breuner C, Moreno M. Approaches to the difficult patient/parent encounter. Pediatrics 2011;127:163.
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.
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.
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.
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.
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.
Maxton FJ. Parental presence during resuscitation in the PICU: the parents’ experience. J Clin Nurs. 2008;17:3168–3176.
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.
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.
Griffiths B, Sebire N, Brierley J. Learning from investigation after death. Ped Crit Care Med. 2018:08;19(8S Suppl 2):S72–S78.
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.
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.
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.
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.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2020 Springer Nature Switzerland AG
About this chapter
Cite this chapter
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
Download citation
DOI: https://doi.org/10.1007/978-3-030-21870-6_53
Published:
Publisher Name: Springer, Cham
Print ISBN: 978-3-030-21869-0
Online ISBN: 978-3-030-21870-6
eBook Packages: MedicineMedicine (R0)