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Ethical Considerations

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Solid Organ Transplantation in Infants and Children

Part of the book series: Organ and Tissue Transplantation ((OTT))

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Abstract

Over the past 60 years, incredible progress has been achieved in pediatric organ transplantation. Some children, who historically would have died with end stage organ failure, are living for decades. Yet, imbedded in this progress are numerous ethical considerations. The discrepancy between the supply and demand of transplantable organs persists, and questions of justice remain prevalent. Transplant professionals are faced with a moral tension, balancing their duty to provide the best medical care for each of their patients, knowing that their decisions directly impact outcomes for other unknown patients. When one child receives an organ, another child goes without and is faced with the risks, morbidities, and mortality associated with longer wait times. Can the supply of organs be increased without causing harm to children and their families? How should parental living organ donors be protected when they are desperate to save the lives of their dying children? How should scarce organs be allocated and who gets to decide? Who is eligible for transplant and what conditions, if any, preclude the opportunity for pediatric transplant? Should transplant professionals ever be obligated to compel a life-saving organ transplant against parental wishes? How do outcome measures and quality assessments of transplant centers impact common practices and decisions? In the following chapter, through a series of case based discussions, common ethical frameworks are used to illuminate important considerations required to address these difficult questions.

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References

  • Alexander S (1962) They decide who live, who dies: medical miracle puts moral burden on small committee. Life 53:102–125

    Google Scholar 

  • American Academy of Pediatrics: Committee on Bioethics (2013) Ethical controversies in organ donation after circulatory death. Pediatrics 131:1021–1026

    Article  Google Scholar 

  • Aulisio MP, DeVita M, Luebke D (2007) Taking values seriously: ethical challenges in organ donation and transplantation for critical care professionals. Crit Care Med 35:S95–S101

    Article  PubMed  Google Scholar 

  • Beecher HK (1968) A definition of irreversible coma. JAMA 205:337–340

    Article  Google Scholar 

  • Bernat JL (2010) How the distinction between “irreversible” and “permanent” illuminates circulatory-respiratory death determination. J Med Phil 35:242–255

    Article  Google Scholar 

  • Bernat JL (2013) Life or death for the dead-donor rule? NEJM 369:1289–1291

    Article  CAS  PubMed  Google Scholar 

  • Bilhartz JL, Lopez MJ, Magee JC et al (2015) Assessing allocation of responsibility for health management in pediatric liver transplant recipients. Pediatr Transplant 19:538–546

    Article  PubMed  PubMed Central  Google Scholar 

  • Brahams D (1996) UK court upholds parents’ decision to stop child’s surgery. Lancet 348:1236

    Article  PubMed  Google Scholar 

  • Breierley J, Larcher V (2011) Organ donation from children: time for legal, ethical and cultural change. Acta Paediatr 100:1175–1179

    Article  Google Scholar 

  • Careddu L, Zanfi C, Pantaleo A et al (2015) Combined heart-liver transplantation: a single-center experience. Transplant Int 28:828–834

    Article  Google Scholar 

  • Coates J (2000) When do parents have the right to refuse medical treatment on behalf of their children? NZ Med J 113:297

    CAS  Google Scholar 

  • Connelly J, Pilch N, Oliver M et al (2015) Prediction of medication non-adherence and associated outcomes in pediatric kidney transplant recipients. Pediatr Transplant 19:555–562

    Article  PubMed  Google Scholar 

  • Consolo HK, Wigmore SJ (2014) Ethical and legal issues associated with organ donation and transplantation. Surgery 32:333–337

    Google Scholar 

  • Cronin DC, Squires J, Squires R et al (2013) Parental refusal of a liver transplant for a child with biliary atresia. Pediatrics 131(1):141–146

    Article  PubMed  Google Scholar 

  • Crowley-Makota M, Siegler M, Cronin D (2004) Long-term quality of life issues among adult-to-pediatric living liver donors: a qualitative exploration. Am J Transplant 4:744–750

    Article  Google Scholar 

  • de Groot Y, Lingsma HF, Bakker J et al (2012) External validation of a prognostic model predicting time of death after withdrawal of life support in neurocritical patients. Crit Care Med 40:233–238

    Article  PubMed  Google Scholar 

  • deSante J, Caplan A, Hippen B et al (2014) Was Sarah Murnaghan treated justly? Pediatrics 134:155–162

    Article  PubMed  Google Scholar 

  • Diekema D (2004) Parental refusals of medical treatment: the harm principle as threshold for state intervention. Theoret Med 25:243–264

    Article  Google Scholar 

  • Downie J (1994) A choice for K’alia: child protection and first nations children. Health Law J 2:99–120

    CAS  PubMed  Google Scholar 

  • Dyer C (1996) Mother wins right to refuse treatment for her child. BMJ 313:1101

    Article  CAS  PubMed  Google Scholar 

  • Erim Y, Beckmann M, Kroencke S et al (2012) Influence of kinship on donors’ mental burden in living donor liver transplantation. Liver Transpl 18:901–906

    Article  PubMed  Google Scholar 

  • Feier FH, Miura IK, Foneseca EA et al (2014) Successful domino liver transplantation in maple syrup urine disease using a living related living donor. Braz J Med Biol Res 47:522–526

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Feng S, Ekong U, Lobrtitto S et al (2012) Complete immunosuppression withdrawal and subsequent allograft function among pediatric recipients of parental living donor liver transplants. JAMA 307:282–293

    Article  Google Scholar 

  • Forsberg A, Nilsson M, Krantz M et al (2004) The essence of living parental liver donation- donors’ lived experiences of donation to their children. Pediatr Transplant 8:372–380

    Article  PubMed  Google Scholar 

  • Fowler A, Freiberger D, Moonan M (2015) Palliative and end-of-life care in pediatric solid organ transplantation. Pediatr Transplant 19:11–17

    Article  PubMed  Google Scholar 

  • Fox R, Swazey J (1998) Leaving the field. In: Caplan A, Coehlho D (eds) The ethics of organ transplants: the current debate. Prometheus Books, New York

    Google Scholar 

  • Grenvik A (1988) Ethical dilemmas in organ donation and transplantation. Crit Care Med 16:1012–1018

    Article  CAS  PubMed  Google Scholar 

  • Gries C, White D, Truog R et al (2013) An official American Thoracic Society/International Society for Heart and Lung Transplantation/ Society of Critical Care Medicine/Association of Organ and Procurement Organizations/United Network of Organ Sharing Statement: ethical and policy considerations in organ donation after circulatory determination of death. Am J Resp Crit Care Med 188:103–109

    Article  PubMed  Google Scholar 

  • Griffin KJ, Elkin TD (2001) Non-adherence in pediatric transplantation: a review of the existing literature. Pediatr Transplant 5:246–249

    Article  CAS  PubMed  Google Scholar 

  • Hsu EK, Shaffer M, Bradford M et al (2015) Heterogeneity and disparities in the use of exception scores in pediatric liver allocation. Am J Transplant 15:436–444

    Article  CAS  PubMed  Google Scholar 

  • Jonsen AR (2007) The God squad and the origins of transplantation ethics and policy. J Law Med Ethics 35:238–240

    Article  PubMed  Google Scholar 

  • Jonson AR (1986) Bentham in a box: technology assessment and health care allocation. Law Med Health Care 14:172–174

    Article  Google Scholar 

  • Keller EJ, Kwo PY, Helft P (2014) Ethical considerations surrounding survival benefit-based liver allocation. Liver Transpl 20:140–146

    Article  PubMed  Google Scholar 

  • Kelley M, Unguru Y, Myers GD et al (2012) An 8-year old foster child with behavioral problems who needs a bone marrow transplant. Pediatrics 130:936–940

    Article  PubMed  Google Scholar 

  • Khan M, Zhang W, Taylor R et al (2015) Survival in pediatric lung transplantation: the effect of center volume and expertise. J Heart Lung Transpl 34:1073–1081

    Article  Google Scholar 

  • Kohn R, Rubenfeld G, Levy M et al (2011) Rule of rescue or the good of many? An analysis of physicians’ and nurses’ preferences for allocating ICU beds. Intens Care Med 37:1210–1217

    Article  Google Scholar 

  • Lefkowitz DS, Fitzgerald CJ, Zelikovsky N et al (2014) Best practices in the pediatric pretransplant psychosocial evaluation. Pediatr Transplant 18:327–335

    Article  PubMed  Google Scholar 

  • Marin-Gomez LM, Tinoco-Gonzalez J, Alamo-Martinez JM et al (2014) Impact of the learning curve on the outcome of domino liver transplantation. Transplant Proc 46:3092–3094

    Article  CAS  PubMed  Google Scholar 

  • Martin DE, Nakagawa TA, Siebelink MJ et al (2015) Pediatric deceased donation – a report of the transplantation society meeting in Geneva. Transplantation 00:1–7

    Google Scholar 

  • Matheny AH, Trotochaud K, Kinlaw K et al (2009) Policies on donation after cardiac death at children’s hospitals: a mixed methods analysis of variation. JAMA 301:1902–1908

    Article  Google Scholar 

  • Matsunami M, Ishiguro A, Fukuda A et al (2015) Successful living domino liver transplantation in a child with protein C deficiency. Pediatr Transplant 19:E70–E74

    Article  PubMed  Google Scholar 

  • McDougall RJ, Notini L (2013) Overriding parents’ medical decisions for their children: a systematic review of normative literature. J Med Ethics 0:1–5

    Google Scholar 

  • McKie J, Richardson J (2003) The rule of rescue. Soc Sci Med 56:2407–2419

    Article  PubMed  Google Scholar 

  • Miller FG, Truog RD (2008) Rethinking the ethics of vital organ donations. Hastings Cent Rep 38:38–46

    Article  PubMed  Google Scholar 

  • Morrissey PE (2012) The case for kidney donation before end-of-life care. Am J Bioeth 12:1–8

    Article  PubMed  Google Scholar 

  • Moseley KL, Kershaw D (2012) African American and White disparities in pediatric kidney transplantation in the United States. Camb Q Healthcare Ethics 21:353–365

    Article  Google Scholar 

  • Munshi L, Dhanani S, Shemie S et al (2015) Predicting time to death after withdrawal of life-sustaining therapy. Intens Care Med 41:1014–1028

    Article  Google Scholar 

  • Murray JS, Tu WH, Albers JB et al (1962) A community hemodialysis center for the treatment of chronic uremia. Trans Am Soc Artif Intern Organs 8:315–319

    Article  CAS  PubMed  Google Scholar 

  • Naim MY, Hoehn S, Hasz R et al (2008) The Children’s Hospital of Philadelphia’s experience with donation after cardiac death. Crit Care Med 36:1729–1733

    Article  PubMed  Google Scholar 

  • Nijagal A, Fleck S, Hills NK et al (2012) Decreased risk of graft failure with maternal liver transplantation in patients with biliary atresia. Am J Transplant 12:409–419

    Article  CAS  PubMed  Google Scholar 

  • OPTN/UNOS Ethics Committee (2015) Ethical principles to be considered in the allocation of human organs. http://optn.transplant.hrsa.gov/resources/ethics/ethical-principles-in-the-allocation-of-human-organs/. Accessed 28 July 2015

  • OPTN/UNOS Ethics Committee and Pediatric Transplant Committee (2014) Ethical principles of pediatric organ allocation. http://optn.transplant.hrsa.gov/resources/ethics/ethical-principles-of-pediatric-organ-allocation/. Accessed 28 July 2015

  • Osborne M, Evans T (1994) Allocation of resources in intensive care: a transatlantic perspective. Lancet 343: 778–780

    Article  CAS  PubMed  Google Scholar 

  • Panocchia N, Bossola M, Vivanti G (2010) Transplantation and mental retardation: what is the meaning of discrimination? Am J Transplant 10:727–730

    Article  CAS  PubMed  Google Scholar 

  • Popescu I, Dima S (2012) Domino liver transplantation: how far can we push the paradigm? Liver Transpl 18:22–28

    Article  PubMed  Google Scholar 

  • President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1981) Defining death: a report on the medical, legal and ethical issues in the determination of death. US Government Printing Office, Washington, DC

    Google Scholar 

  • Rady M, Verheijide JL (2012) Autoresuscitation and determining circulatory-respiratory death in clinical practice for organ donation. Crit Care Med 40:1655–1656

    PubMed  Google Scholar 

  • Rana A, Pallister Z, Halazun K et al (2015) Pediatric liver transplant center volume and the likelihood of transplantation. Pediatrics 136:e99–e107

    Article  PubMed  Google Scholar 

  • Reding R (2008) Living donor liver transplantation for children in highly urgent life-threatening situations. Pediatr Transplant 12:261–262

    Article  PubMed  Google Scholar 

  • Richards CT, Crawly LVM, Magnus D (2009) Use of neurodevelopmental delay in pediatric solid organ transplant listing decisions: inconsistencies in standards across major pediatric transplant centers. Pediatr Transplant 13:843–850

    Article  PubMed  Google Scholar 

  • Robertson JA (1999) The dead donor rule. Hastings Cent Rep 29:6–14

    Article  CAS  PubMed  Google Scholar 

  • Rodriguez-Arias D, Smith MJ, Lazar NM (2011) Donation after circulatory death: burying the dead donor rule. Am J Bioethics 11:36–43

    Article  Google Scholar 

  • Ross LF (1998) Children, families, and health care decision making. Oxford University Press, New York

    Google Scholar 

  • Ross LF, Thistlethwaite JR, American Academy of Pediatrics Committee on Bioethics (2008) Minors as living solid-organ donors. Pediatrics 122:454–461

    Article  PubMed  Google Scholar 

  • Sarnaik A, Clark J, Meert K et al (2013) Views of pediatric intensive care physicians on the ethics of organ donation after cardiac death. Crit Care Med 41:1733–1744

    Article  PubMed  Google Scholar 

  • Shapiro C (2005) Organ transplantation in infants and children- necessity or choice: the case of K’aila Paulette. Pediatr Nurs 31:121–122

    PubMed  Google Scholar 

  • Shemie SD, Hornby L, Baker A et al (2014) International guideline development for the determination of death. Intens Care Med 40:788–797

    Article  Google Scholar 

  • Sheth KN, Nutter T, Stein D et al (2012) Autoresuscitation after asystole in patients being considered for organ donation. Crit Care Med 40:158–161

    Article  PubMed  Google Scholar 

  • Shore PM, Huang R, Roy L et al (2012) Development of a bedside tool to predict time to death after withdrawal of life-sustaining therapies in infants and children. Pediatr Crit Care Med 13:415–422

    Article  PubMed  Google Scholar 

  • Spital A (2005) More on parental living liver donation for children with fulminant hepatic failure: addressing concerns about competing interests, coercion, consent, and balancing acts. Am J Transplant 5:2619–2622

    Article  PubMed  Google Scholar 

  • Stiers J, Aguayo C, Siatta A et al (2015) Potential and actual neonatal organ and tissue donation after circulatory determination of death. JAMA Pediatr 169:639–645

    Article  PubMed  Google Scholar 

  • Strong RW, Lynch SV (1998) Ethical issues in living related donor liver transplantation. In: Caplan A, Coelho D (eds) The ethics of organ transplants: the current debate. Prometheus Books, New York

    Google Scholar 

  • Superina RA, Harrison C, Alonso EM et al (1999) Ethical issues in pediatric liver transplantation. Transplant Proc 31:1342–1344

    Article  CAS  PubMed  Google Scholar 

  • Thomas E, Brahall S, Herington J et al (2014) Live liver donation, ethics and practitioners: ‘I am between the two and if I do not feel comfortable about the situation, I cannot proceed’. J Med Ethics 40:157–162

    Article  PubMed  Google Scholar 

  • USA Today (2013) Disabled NJ girl thrives, inspires after transplant. http://www.usatoday.com/story/news/nation/2013/10/05/disabled-transplant-amelia-rivera/2917989/. Accessed 8 Mar 2015

  • Toker A, Salzar L (2012) Pediatric liver transplantation- ethical dilemmas in a disabled patient. Pediatr Transplant 16:E257–E260

    Article  CAS  PubMed  Google Scholar 

  • Truog R, Miller F (2008) The dead donor rule and organ transplantation. NEJM 359:674–675

    Article  CAS  PubMed  Google Scholar 

  • Truog R, Robinson W (2003) Role of brain death and the dead donor rule in the ethics of organ transplantation. Crit Care Med 31:2391–2396

    Article  PubMed  Google Scholar 

  • Truog R, Miller F, Halpern SD (2013) The dead-donor rule and the future of organ donation. NEJM 369:1287–1289

    Article  CAS  PubMed  Google Scholar 

  • United Nations General Assembly: Convention on the Rights of Persons with Disabilities (2006) Final report of the Ad Hoc Committee on a comprehensive and integral international converntion on the protection and promotion of the righsts and dignity of persons with disabilities. http://daccess-dds-ny.un.org/doc/UNDOC/LTD/N06/645/30/PDF/N0664530.pdf?OpenElement. Accessed 8 Apr 2015

  • United Network for Organ Sharing (UNOS) (2015) Transplant trends. https://www.unos.org/data/transplant-trends. Accessed 8 July 2015

  • Van Dijk G, Hilhorst M, Rings E (2014) Liver, pancreas and small bowel transplantation: current ethical issues. Best Pract Res Clin Gastroenterol 28:281–292

    Article  PubMed  Google Scholar 

  • Veatch RM (2015) Killing by organ procurement: brain based death and legal fictions. J Med Philos 40:289–311

    Article  PubMed  Google Scholar 

  • Veatch RM, Ross LR (2015) Transplantation ethics, 2nd edn. Georgetown University Press, Washington, DC

    Google Scholar 

  • Ventura KA (2010) Ethical considerations in live liver donation to children. Progr Transplant 20:186–190

    Article  Google Scholar 

  • Wightman A, Young B, Bradford M et al (2014) Prevalence and outcomes of renal transplantation in children with intellectual disability. Pediatr Transplant 18:714–719

    Article  PubMed  PubMed Central  Google Scholar 

  • Wind J, Snoejis M, Brugman C et al (2012) Prediction of time of death after withdrawal of life-sustaining treatment in potential donors after cardiac death. Crit Care Med 40:766–769

    Article  PubMed  Google Scholar 

  • Workman JK, Myrick CW, Meyers L et al (2013) Pediatric organ donation and transplantation. Pediatrics 131:e1723–e1730

    Article  PubMed  Google Scholar 

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Authors and Affiliations

  1. Pediatric Critical Care Medicine, Treuman Katz Center for Pediatric Bioethics, Department of Pediatrics, University of Washington School of Medicine, Seattle Children’s Hospital, 4800 Sand Point Way NE, Seattle, WA, 98105-0371, USA

    Jonna D. Clark

  2. Department of Bioethics and Humanities, University of Washington School of Medicine, Seattle, WA, USA

    Denise M. Dudzinski

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  1. Jonna D. Clark
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Correspondence to Jonna D. Clark .

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Editors and Affiliations

  1. Department of Surgery, Jefferson Medical College, Wilmington, Delaware, USA

    Stephen P. Dunn

  2. Division of Gastroenterology, Seattle Children’s Hospital, Seattle, Washington, USA

    Simon Horslen

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Clark, J.D., Dudzinski, D.M. (2018). Ethical Considerations. In: Dunn, S., Horslen, S. (eds) Solid Organ Transplantation in Infants and Children. Organ and Tissue Transplantation. Springer, Cham. https://doi.org/10.1007/978-3-319-07284-5_1

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  • DOI: https://doi.org/10.1007/978-3-319-07284-5_1

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