Abstract
More and more children are surviving through PICU discharge. But discharge may be following a prolonged hospital course, and they may leave with a new slew of medical conditions, sometimes including dependence upon medical technology. This is the pediatric chronically critically ill child. While a definition of pediatric chronic critical illness (PCCI) is not clearly defined, the data supports that it is a cohort of patients that pediatric intensivists are increasingly manage. This chapter addresses the ethical issues that arise with pursuing life-saving measure that result in chronically critically illness, provision of appropriate resources for these conditions, in addition to ethical concerns regarding withdrawal of technological support.
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References
Almond, C.S., et al. 2013. Berlin heart EXCOR pediatric ventricular assist device for bridge to heart transplantation in US children. Circulation 127 (16): 1702–1711.
Amodeo, A., and R. Adorisio. 2012. Left ventricular assist device in Duchenne cardiomyopathy: Can we change the natural history of cardiac disease? International Journal of Cardiology 161 (3): e43.
Benneyworth, B.D., et al. 2011. Inpatient health care utilization for children dependent on long-term mechanical ventilation. Pediatrics 127 (6): e1533–e1541.
Carnevale, F.A., et al. 2006. Daily living with distress and enrichment: The moral experience of families with ventilator-assisted children at home. Pediatrics 117 (1): e48–e60.
Cristea, A.I., et al. 2015. Median household income: Association with mortality in children on chronic ventilation at home secondary to bronchopulmonary dysplasia. Pediatric Allergy, Immunology, and Pulmonology 28 (1): 41–46.
de Trey, L., et al. 2013. Pediatric tracheotomy: A 30-year experience. Journal of Pediatric Surgery 48 (7): 1470–1475.
DeMartino, E.S., et al. 2017. Ethical analysis of withdrawing total artificial heart support. Mayo Clinic Proceedings 92 (5): 719–725.
Fayssoil, A., et al. 2010. Cardiomyopathy in Duchenne muscular dystrophy: Pathogenesis and therapeutics. Heart Failure Reviews 15 (1): 103–107.
Friedman, S.L., et al. 2014. Out-of-home placement for children and adolescents with disabilities. Pediatrics 134 (4): 836–846.
Girard, K., and T.A. Raffin. 1985. The chronically critically ill: To save or let die? Respiratory Care 30 (5): 339–347.
Henderson, C.M., et al. 2017. “Stuck in the ICU”: Caring for children with chronic critical illness. Pediatric Critical Care Medicine.
Lewis, C.W., et al. 2003. Tracheotomy in pediatric patients: A national perspective. Archives of Otolaryngology—Head and Neck Surgery 129 (5): 523–529.
Lipstein, E.A., and M.T. Britto. 2015. Evolution of pediatric chronic disease treatment decisions: A qualitative, longitudinal view of parents’ decision-making process. Medical Decision Making 35 (6): 703–713.
Marcus, K.L., C.M. Henderson, and R.D. Boss. 2016. Chronic critical illness in infants and children: A speculative synthesis on adapting ICU care to meet the needs of long-stay patients. Pediatric Critical Care Medicine 17 (8): 743–752.
McKenzie, M.S., et al. 2015. An observational study of decision making by medical intensivists. Critical Care Medicine 43 (8): 1660–1668.
McPherson, M.L., et al. 2017. A decade of pediatric tracheostomies: Indications, outcomes, and long-term prognosis. Pediatric Pulmonology 52 (7): 946–953.
Namachivayam, S.P., et al. 2015. Five-year survival of children with chronic critical illness in Australia and New Zealand. Critical Care Medicine 43 (9): 1978–1985.
Nelson, J.E., et al. 2010. Chronic critical illness. American Journal of Respiratory and Critical Care Medicine 182 (4): 446–454.
Perri, G., et al. 2017. Left ventricular assist device as destination therapy in cardiac end-stage dystrophinopathies: Midterm results. Journal of Thoracic and Cardiovascular Surgery 153 (3): 669–674.
Peterson-Carmichael, S.L., and I.M. Cheifetz. 2012. The chronically critically ill patient: Pediatric considerations. Respiratory Care 57 (6): 993–1002 (discussion 1002-3).
Purkey, N.J., et al. 2017. Long-term pediatric ventricular assist device therapy: A case report of 2100+ days of support. ASAIO Journal.
Rady, M.Y., and J.L. Verheijde. 2014. Ethical challenges with deactivation of durable mechanical circulatory support at the end of life: Left ventricular assist devices and total artificial hearts. Journal of Intensive Care Medicine 29 (1): 3–12.
Rizzieri, A.G., et al. 2008. Ethical challenges with the left ventricular assist device as a destination therapy. Philosophy, Ethics, and Humanities in Medicine 3: 20.
Rose, E.A., et al. 2001. Long-term use of a left ventricular assist device for end-stage heart failure. New England Journal of Medicine 345 (20): 1435–1443.
Shapiro, M.C., et al. 2017. Defining pediatric chronic critical illness for clinical care, research, and policy. Hospital Pediatrics 7 (4): 236–244.
Sulmasy, D.P. 2008. Within you/without you: Biotechnology, ontology, and ethics. Journal of General Internal Medicine 23 (Suppl 1): 69–72.
van Manen, M.A. 2017. The ventricular assist device in the life of the child: A phenomenological pediatric study. Qualitative Health Research 27 (6): 792–804.
Wilfond, B.S. 2014. Tracheostomies and assisted ventilation in children with profound disabilities: Navigating family and professional values. Pediatrics 133 (Suppl 1): S44–S49.
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Miller-Smith, L., Finnsdóttir Wagner, Á., Lantos, J.D. (2019). Chronically Critically Ill with Technological Dependence. In: Bioethics in the Pediatric ICU: Ethical Dilemmas Encountered in the Care of Critically Ill Children. International Library of Ethics, Law, and the New Medicine, vol 77. Springer, Cham. https://doi.org/10.1007/978-3-030-00943-4_7
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DOI: https://doi.org/10.1007/978-3-030-00943-4_7
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