Prenatally-diagnosed renal failure: an ethical framework for decision-making.
Journal
Journal of perinatology : official journal of the California Perinatal Association
ISSN: 1476-5543
Titre abrégé: J Perinatol
Pays: United States
ID NLM: 8501884
Informations de publication
Date de publication:
21 Sep 2023
21 Sep 2023
Historique:
received:
09
12
2022
accepted:
12
09
2023
revised:
31
08
2023
medline:
22
9
2023
pubmed:
22
9
2023
entrez:
21
9
2023
Statut:
aheadofprint
Résumé
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.
Identifiants
pubmed: 37735209
doi: 10.1038/s41372-023-01779-1
pii: 10.1038/s41372-023-01779-1
doi:
Types de publication
Journal Article
Review
Langues
eng
Sous-ensembles de citation
IM
Informations de copyright
© 2023. The Author(s), under exclusive licence to Springer Nature America, Inc.
Références
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.
doi: 10.1159/000507700
pubmed: 32516788
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.
doi: 10.1159/000509749
pubmed: 32772023
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.
doi: 10.1097/AOG.0000000000002416
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.
doi: 10.1053/j.semperi.2013.07.007
pubmed: 24468568
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.
doi: 10.1542/peds.2019-1925
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.
doi: 10.1038/s41372-021-01293-2
pubmed: 35031688
Wendler D, Nelson RM, Lantos JD. The potential benefits of research may justify certain research risks. Pediatrics 2019;143:e20181703.
doi: 10.1542/peds.2018-1703
pubmed: 30787097
Wightman A, Diekema D. Parental decision-making and the limitations of the equivalence thesis. Am J Bioeth. 2019;19:43–5.
doi: 10.1080/15265161.2018.1563923
pubmed: 31543040
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.
doi: 10.1002/uog.13258
pubmed: 24265189
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.
doi: 10.1002/pd.5658
pubmed: 32003482
pmcid: 7780162
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.
doi: 10.1159/000497472
pubmed: 30897573
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.
doi: 10.1097/AOG.0000000000002637
pubmed: 29742659
pmcid: 5970061
Kulczycki A. Dobb: navigating the new quagmire and its impacts on abortion and reproductive health care. Health Educ Behav. 2022;49:924–8.
doi: 10.1177/10901981221125430
pubmed: 36173003
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 .
doi: 10.1188/10.CJON.514-516
pubmed: 20682509
Austin MD, Cole TR, McCullough LB, Chervenak FA. Ethical challenges in invasive maternal-fetal intervention. Semin Pediatr Surg. 2019;28:150819.
doi: 10.1053/j.sempedsurg.2019.07.002
pubmed: 31451174
Chervenak FA, McCullough LB. The ethics of maternal-fetal surgery. Semin Fetal Neonatal Med. 2018;23:64–7.
doi: 10.1016/j.siny.2017.09.008
pubmed: 28986215
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.
doi: 10.1097/SLA.0000000000002794
pubmed: 29697448
Geiger JD, Hirschl RB. Innovation in surgical technology and techniques: challenges and ethical issues. Semin Pediatr Surg. 2015;24:115–21.
doi: 10.1053/j.sempedsurg.2015.02.008
pubmed: 25976146
Reitsma AM, Moreno JD. Ethical regulations for innovative surgery: the last frontier? J Am Coll Surg. 2002;194:792–801.
doi: 10.1016/S1072-7515(02)01153-5
pubmed: 12081071
Johnson J, Rogers W. Innovative surgery: the ethical challenges. J Med Ethics. 2012;38:9e–12e.
doi: 10.1136/jme.2010.042150
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.
doi: 10.1515/jpm-2016-0367
pubmed: 28222038
pmcid: 5509412
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.
doi: 10.1097/FM9.0000000000000085
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.
doi: 10.1016/j.ajog.2011.06.006
pubmed: 21831353
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.
doi: 10.1016/j.ajog.2009.05.057
pubmed: 19762005
Moldenhauer JS, Adzick NS. Fetal surgery for myelomeningocele: after the Management of Myelomeningocele Study (MOMS). Semin Fetal Neonatal Med. 2017;22:360–6.
doi: 10.1016/j.siny.2017.08.004
pubmed: 29031539
https://optn.transplant.hrsa.gov/
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.
doi: 10.2215/CJN.12741215
pubmed: 27037272
pmcid: 4974893
American Academy of Pediatrics Committee on Bioethics. Informed consent in decision-making in pediatric practice. Pediatrics 2016;138:e20161484.
doi: 10.1542/peds.2016-1484
Salter AK, Hester DM, Vinarcsik L, Antommaria AHM, Bester J, Blustein J, et al. Pediatric decision-making: consensus recommendations. Pediatrics. 2023;152:e2023061832.
doi: 10.1542/peds.2023-061832
pubmed: 37555276
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.
doi: 10.1097/CCM.0000000000001396
pubmed: 26509317
pmcid: 4788386
Kon AA, Morrison W. Shared decision-making in pediatric practice: a broad view. Pediatrics. 2018;142:S129–32.
doi: 10.1542/peds.2018-0516B
pubmed: 30385618
Hagell P, Reimer J, Nyberg P. Whose quality of life? Ethical Implications in patient-reported health outcome measurement. Value Health. 2009;12:613–7.
doi: 10.1111/j.1524-4733.2008.00488.x
pubmed: 19900259
Fuhrer MJ. Subjectifying quality of life as a medical rehabilitation outcome. Disabil Rehabil. 2000;22:481–9.
doi: 10.1080/096382800413961
pubmed: 10972351
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.
doi: 10.3109/13668250.2017.1310813
Kopelman LM. The best interests standard as threshold, ideal, and standard of reasonableness. J Med Philos. 1997;22:271–89.
doi: 10.1093/jmp/22.3.271
pubmed: 9232512
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.
doi: 10.1016/j.siny.2017.05.002
pubmed: 28551276
Diekema S. Decision-making on behalf of children. understanding the harm principle. J Clin Ethics. 2019;30:207–12.
doi: 10.1086/JCE2019303207
pubmed: 31573963
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.
doi: 10.1177/1477750915622033
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.
doi: 10.1097/CCM.0000000000001965
pubmed: 27525995
Han JJ, Swain JD. The Perfect ECMO Candidate. J Am Coll Cardiol. 2018;71:1178–82.
doi: 10.1016/j.jacc.2018.02.001
pubmed: 29519358
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.