Abstract
The Children’s Hospital Working Group has developed an ethical framework to guide patient care and research for prenatally diagnosed severe renal anomalies. It identifies ethical challenges in communication, timing of decisions and scarce resources. Key elements include shared decision-making, establishing a trusting relationship, and managing disagreement. The ethical framework will be used to develop a clinical pathway that operationalizes the key values of trust, honesty, transparency, beneficence, nonmaleficence, respecting parental authority, professional integrity, and justice.
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References
Riddle S, Habli M, Tabbah S, Lim FY, Minges M, Kingma P, et al. Contemporary outcomes of patients with isolated bilateral renal agenesis with and without fetal intervention. Fetal Diagn Ther. 2020;47:675–81.
Jelin EB, Atkinson M, Keiser A, Blumenfeld YS, Baschat AA. Letter response to “Contemporary outcomes of patients with isolated bilateral renal agenesis with and without fetal interventions” by RAFT investigators. Fetal Diagn Ther. 2020;47:785–6.
Sugerman J, Anderson J, Bashat AA, Beutler JH, Bienstock JL, Bunchman TE, et al. Ethical considerations concerning amnioinfusions for treating fetal bilateral renal agenesis. Obstet Gynecol. 2018;131:130–4.
Janvier A, Barrington K, Farlow B. Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology. Semin Perinatol. 2014;38:38–46.
Lizotte MH, Barrington KJ, Sultan S, Pennaforte T, Moussa A, Lachance C, et al. Techniques to communicate better with parents during end-of-life scenarios in neonatology. Pediatrics. 2020;145:1–9.
Winters R, Hennigan CM, Tucker R, Clark MA, Hawes K, Lechner BE. Words matter: exploring communication between patents and neonatologists. J Perinatol. 2022;42:745–51.
Wendler D, Nelson RM, Lantos JD. The potential benefits of research may justify certain research risks. Pediatrics 2019;143:e20181703.
Wightman A, Diekema D. Parental decision-making and the limitations of the equivalence thesis. Am J Bioeth. 2019;19:43–5.
Roberts D, Vause S, Martin W, Green P, Walkinshaw S, Bricher L, et al. Amnioinfusion in very early preterm prelabor rupture of membranes (AMIPROM): pregnancy, neonatal and maternal outcomes in a randomized controlled pilot study. Ultrasound Obstet Gynecol. 2014;43:490–9.
Jelin AC, Sagazer KG, Forster KR, Ibekwe T, Norton ME, Jelin EB. Etiology and management of early pregnancy renal anhydramnios: is there a place for serial amnioinfusions? Prenat Diagn. 2020;40:528–37.
O’Hare E, Jelin AC, Miller JL, Ruano R, Atkinson MA, et al. Amnioinfusions to treat early onset anhydramnios caused by renal anomalies: background and rationale for the renal anhydramnios fetal therapy trial. Fetal Diagn Ther. 2019;45:365–72.
Moxey-Mims M, Raju TNK. Anhydramnios in the setting of renal malformations: the national institutes of health workshop summary. Obstet Gynecol. 2018;131:1069–79.
Kulczycki A. Dobb: navigating the new quagmire and its impacts on abortion and reproductive health care. Health Educ Behav. 2022;49:924–8.
Kaplan M. SPIKES: a framework for breaking bad news to patients with cancer. Clin J Oncol Nurs. 2010;14:514–6. https://doi.org/10.1188/10.CJON.514-516.
Austin MD, Cole TR, McCullough LB, Chervenak FA. Ethical challenges in invasive maternal-fetal intervention. Semin Pediatr Surg. 2019;28:150819.
Chervenak FA, McCullough LB. The ethics of maternal-fetal surgery. Semin Fetal Neonatal Med. 2018;23:64–7.
Hirst A, Philippou Y, Blazeby J, Campbell B, Campbell M, Feinberg J, et al. No surgical innovation without evaluation: evolution and further development of the IDEAL framework and recommendations. Ann Surg. 2019;269:211–20.
Geiger JD, Hirschl RB. Innovation in surgical technology and techniques: challenges and ethical issues. Semin Pediatr Surg. 2015;24:115–21.
Reitsma AM, Moreno JD. Ethical regulations for innovative surgery: the last frontier? J Am Coll Surg. 2002;194:792–801.
Johnson J, Rogers W. Innovative surgery: the ethical challenges. J Med Ethics. 2012;38:9e–12e.
Thomas AN, McCullough LB, Chervenak FA, Placencia FX. Evidence-based, ethically justified counseling for fetal bilateral renal agenesis. J Perinat Med. 2017;45:585–94.
Chervenak FA, McCullough LB. Ethically justified practical guidelines for the professionally responsible investigation of maternal-fetal intervention for fetal or neonatal benefits. Matern-Fetal Med. 2021;3:208–12.
Chervenak FA, McCullough LB, Brent JL. The professional responsibility model of obstetrical ethics: avoiding the perils of clashing rights. Am J Obstet Gynecol. 2011;205:315. E1–5.
Williams C. Dilemmas in fetal medicine: premature application of technology or responding to women’s choice. Sociol Health Illn. 2005;28:1–20.
Chervenak FA, McCullough LB. An ethically justified practical approach to offering, recommending, performing and referring for induced abortion and feticide. Am J Obstet Gynecol. 2009;201:560.e1–6.
Moldenhauer JS, Adzick NS. Fetal surgery for myelomeningocele: after the Management of Myelomeningocele Study (MOMS). Semin Fetal Neonatal Med. 2017;22:360–6.
Wightman A, Freeman M. Update on ethical issues in pediatric dialysis: has pediatric dialysis become morally obligatory. Clin J Am Soc Nephrol. 2016;11:1456–62.
American Academy of Pediatrics Committee on Bioethics. Informed consent in decision-making in pediatric practice. Pediatrics 2016;138:e20161484.
Salter AK, Hester DM, Vinarcsik L, Antommaria AHM, Bester J, Blustein J, et al. Pediatric decision-making: consensus recommendations. Pediatrics. 2023;152:e2023061832.
Kon AA, Davidson JE, Morrison W, Danis M, White DB. Shared decision-making in ICU’s: an American College of Critical Care Me dicine and American Thoracic Society Policy Statement. Crit Care Med. 2016;44:188–201.
Kon AA, Morrison W. Shared decision-making in pediatric practice: a broad view. Pediatrics. 2018;142:S129–32.
Hagell P, Reimer J, Nyberg P. Whose quality of life? Ethical Implications in patient-reported health outcome measurement. Value Health. 2009;12:613–7.
Fuhrer MJ. Subjectifying quality of life as a medical rehabilitation outcome. Disabil Rehabil. 2000;22:481–9.
De Geus-Neelen KCJM, van Oorsouw WMWJ, Hendricks LAHC, Emgregts PJCM. Perception of staff and family of the quality of life of people with severe to profound intellectual disability. J Intellect Dev Disabil 2019;44:42–50.
Kopelman LM. The best interests standard as threshold, ideal, and standard of reasonableness. J Med Philos. 1997;22:271–89.
ACOG Committee on Ethics & AAP Committee on Bioethics Committee Opinion no. 54. Maternal-fetal interventions and fetal care centers. Obstet Gynecol. 2011;118:405–10.
Wilkinson D. Who should decide for critically ill neonates and how? The grey zone in neonatal treatment decisions. In McDougall R, Delany C, Gillam L, editors. When doctors and parents disagree: ethics, paediatrics & the zone of parental discretion. Sydney (AU): The Federation Press; 2016.
Antiel RM, Flake AW. Responsible surgical innovation and research in maternal-fetal surgery. Semin Fetal Neonatal Med. 2017;22:423–7.
Diekema S. Decision-making on behalf of children. understanding the harm principle. J Clin Ethics. 2019;30:207–12.
Gilliam L. The zone of parental discretion: an ethical tool for dealing with disagreement between parents and doctors about medical treatment for a child. Clin Ethics. 2016;11:1–10.
Kon AA, Shepard EK, Sederstrom NO, Swoboda SM, Marshall MF, Birriel B, et al. Defining futility and potentially inappropriate interventions: a policy statement from the Society of Critical Care Medicine Ethics Committee. Crit Care Med. 2016;44:1769–74.
Han JJ, Swain JD. The Perfect ECMO Candidate. J Am Coll Cardiol. 2018;71:1178–82.
Perinatal palliative care: ACOG COMMITTEE OPINION, Number 786. Obstet Gynecol. 2019;134:e84–9.
Kherbache A, Mertens E, Denier Y. Moral distress in medicine: an ethical analysis. J Health Psychol. 2022;27:1971–90.
Acknowledgements
Other Members of the Ethics Consult Service at CHCO including Curtis R. Coughlin II, PhD, MBE, HEC-C; Brian M. Jackson, MD, MA, HEC-C; and Karen Jones, MS, RNC, HEC-C who reviewed and commented on drafts and the final paper.
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JG—literature review, outline development, draft preparation, final editing, submission. MB—literature review, outline development, draft review and editing. RR—literature review, outline development, draft review and editing. MZ—literature review, draft review and editing. VV—literature review, outline development, draft review and editing.
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Glover, J., Bock, M., Reynolds, R. et al. Prenatally-diagnosed renal failure: an ethical framework for decision-making. J Perinatol (2023). https://doi.org/10.1038/s41372-023-01779-1
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DOI: https://doi.org/10.1038/s41372-023-01779-1