Ethics Committee Literature Reviews
The Ethics Committee has identified the following literature reviews to help identify best-practice and appropriate standards for clinical management of pediatric surgical disease.
If you have questions, contact Deborah Loeff.
The APSA Ethics Committee
View the current members of this committee.
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Ethical, Moral, and Theological Insights into Advances in Male Pediatric and Adolescent Fertility Preservation
Ramstein et al. Andrology. 2017 (5): 631–639
With the rates of survivorship for children and adolescents diagnosed with cancer improving significantly, focus has shifted towards ensuring a better quality of life for survivors which includes addressing the potential infertility and premature gonadal failure. Pediatric surgeons are often involved in the comprehensive cancer care of their patients and may be asked to participate in fertility preservation initiatives.
Ramstein examines the ethical dilemmas associated with fertility preservation. Despite the focus on sperm banking and testicular tissue cryopreservation, the ethical considerations addressed can be easily applied to both male and female fertility preservation initiatives.
The only pretreatment fertility preservation options for prepubertal males and females are testicular and ovarian tissue cryopreservation - both of which are considered experimental at this point in time. Given the experimental nature there are ethical dilemmas associated with prepubertal fertility preservation initiatives including balancing the risks and benefits of pursuing fertility preservation in the context of starting cancer treatments.
Many of the ethical concerns are rooted in the fact that the child is unable to consent/assent for the procedure and therefore we expect that the parent will act in the child’s best interest. The authors expand on this concept by introducing the idea of preserving a “child’s right to an open future” which they define as upholding the ability for a child to have his/her autonomy preserved until he/she is able to make his/her own independent decisions. With this principle in mind, one may justify pursuing experimental fertility preservation for a prepubertal child as a potential method to provide autonomous, future reproductive options.
The authors also discuss the concern about posthumous reproduction in the setting of cryopreserved gametes and the decisions that have to be made regarding whether tissue is discarded or donated to research after a child’s death.
The other articles of interest listed below are resources to better understand the current state of fertility preservation for children facing gonadotoxic treatments.
Other articles you mau find interesting:
And a follow-up from last month's articles on fertility preservation:
Single-cell Sequencing of Neonatal Uterus Reveals an Misr2+ Endometrial Progenitor Indispensable for Fertility.
Saatcioglu et al. Elife. 2019 Jun 24;8. PMID: 31232694
Other articles you may find interesting:
Fertility Preservation Options in Pediatric Adolescent Patients with Cancer
Burns et al. Cancer. 2018 May 1;124 (9):1867-1876. PMID: 29370455
Fertility and Hormone Preservation and Restoration for Female Children and Adolescents Receiving Gonadotoxic Cancer Treatments: A Systematic Review
Corkum et al. J Pediatr Surg. 2019 Jan 22. [epub ahead of print] PMID: 30773394
A Review of the Oncology Patient’s Challenges for Utilizing Fertility Preservation Services
Flink et al. J Adolesc Young Adult Oncol. 2017 Mar; 6 (1):31-44. PMID: 27529573
Fertility Preservation in Patients with Cancer: ASCO Clinical Practice Guideline Update
Oktay et al. JCO. 2018 July; 36(19):1994-2001. PMID 29620997
“Longshot” to “Fantasy”: Obligations to Pediatric Patients and Families When Last-Ditch Medical Efforts Fail
Weiss and Fiester. The American Journal of Bioethics. 2018, 18(1):3-11.
It is not infrequent that pediatric surgeons find themselves struggling with the issue of providing a medically complex treatment plan with a low probability of success in order to support families who are distraught over the possibility of the death of their child. Surgeons may feel pressure to honor a family’s request to “do everything possible” even when it becomes clear that “everything possible” will not be curative. This article offers surgeons the tools needed to help families (and even other health care providers) accept limitations of medical care, clarify the endpoints of interventions and refocus care toward assuring a comfortable death.
“Longshot” treatment options often continue past the point at which curative options are medically feasible. Continued aggressive treatment in this setting may result in harm to the patients, parents and health care team members. In this paper, authors present a structured approach to guiding surgeons and other physicians through this transition from “longshot” to “fantasy” care. The described approach is designed to minimize patient pain, the emotional burden faced by the family and decrease moral distress for the health care team. Two clinical examples are highlighted to illustrate the described approach.
*Click here to view the Visual Abstract.
Other articles you may find interesting:
What the “F”?
Chen et al. The American Journal of Bioethics. 2018. 18(1): 16-18. PMID: 29313770.
Unilateral Withdrawal of Life-sustaining Therapy in a Severely Impaired Child
Miller et al. Pediatrics. 2018.142 (5):1-5. PMID 30315121
Navigating Decisional Discord: The Pediatrician’s Role When Child and Parents Disagree
Bryan A. Sisk, James DuBois, Eric Kodish, Joanne Wolfe, Chris Feudtner
Pediatrics. June 2017, VOLUME 139 / ISSUE 6
Copyright © 2017 by the American Academy of Pediatrics
Ethical and End of Life Considerations for Neonates Requiring ECMO Support
Kirsch R, Munson D
Semin Perinatol. 2018 Jan 10. pii: S0146-0005(17)30146-5
Informed Consent in Decision-Making in Pediatric Practice.
Katz AL, Webb SA; Comittee on Bioethics.
Pediatrics. 2016 Aug;138(2).
Responsible Surgical Innovation and Research in Maternal-fetal Surgery.
Antiel RM, Flake AW.
Semin Fetal Neonatal Med. 2017 May 24. [Epub ahead of print]
Ethics, Emotions, and the Skills of Talking About Progressing Disease with Terminally Ill Adolescents:
Rosenberg AR, Wolfe J, Wiener L, Lyon M, Feudtner C.
JAMA Pediatr. 2016 Dec 1;170(12):1216-1223.
International Variations in Application of the Best-Interest Standard Across the Age Spectrum
Laventhal N, Verhagen AA, Hansen TW, Dempsey E, Davis PG, Musante GA, Wiles A, Meadow W, Janvier A.
J Perinatol. 2017 Feb;37(2):208-213.
Parental Refusal of Surgery in an Infant with Tricuspid Atresia
Konn AA, Patel A, Leuthner S, Lantos JD.
Pediatrics. 2016 Nov;138(5).
Two Infants, Same Prognosis, Different Parental Preferences
A Qualitative Study Exploring Moral Distress Among Pediatric Resuscitation Team Clinicians:
Antommaria AH, Collura CA, Antiel RM, Lantos JD.
Pediatrics. 2015 May;135(5):918-23. doi: 10.1542/peds.2013-4044. Epub 2015 Apr 6.
Challenges to Professional Integrity
Tessy A. Thomas, DO, MBE; Satid Thammasitboon, MD, MHPE; Dorene F. Balmer, PhD; Kevin Roy, MD; Laurence B. McCullough, PhD
Pediatr Crit Care Med. 2016 Jul;17(7):e303-8. doi: 10.1097/PCC.0000000000000773.
The ethics of neonatal research: an ethicist's and a parents' perspective
Janvier A, Farlow B.
Semin Fetal Neonatal Med. 2015 Dec;20(6):436-41. doi: 10.1016/j.siny.2015.10.003. Epub 2015 Oct 20.
PMID: 26497942 [PubMed - in process]
The darkening veil of "do everything"
Feudtner C, Morrison W.
Arch Pediatr Adolesc Med. 2012 Aug;166(8):694-5. doi: 10.1001/archpediatrics.2012.175.
PMID: 22869401 [PubMed - indexed for MEDLINE]
Doctor, What Would You Do? An ANSWER for Patients Requesting Advice About Value-Laden Decisions
Tucker Edmonds B, Torke AM, Helft P, Wocial LD.
Pediatrics. 2015 Oct;136(4):740-5. doi: 10.1542/peds.2015-1808.
PMID: 26416929 [PubMed - indexed for MEDLINE]
Hospital Use in the Last Year of Life for Children With Life-Threatening Complex Chronic Conditions
Ananth P, Melvin P, Feudtner C, Wolfe J, Berry JG.
Pediatrics. 2015 Nov;136(5):938-46. doi: 10.1542/peds.2015-0260. Epub 2015 Oct 5.
[PubMed - indexed for MEDLINE] PMCID: PMC4621793 [Available on 2016-11-01]
Please Do Whatever It Takes to End Our Daughter's Suffering!
Clément de Cléty S, Friedel M, Verhagen AA, Lantos JD, Carter BS.
Pediatrics. 2016 Jan;137(1):1-6. doi: 10.1542/peds.2015-3812. Epub 2015 Dec 7.
PMID: 26644491 [PubMed - in process]