Ethics Articles of Interest

Articles

An Ethically Justifiable, Practical Approach to Decision-Making Surrounding Conjoined-Twin Separation [1], Thomas et al. Semin Perinato. 2018 Oct;42(6):381-385.

The care of conjoined twins presents unique ethical challenges to the pediatric surgeon. The decision for and timing of separation of conjoined twins involves the principles of beneficence, non-maleficence, autonomy, and equity. The care of conjoined twins may also require the input of palliative care if one or both of the twins suffer(s) from lethal anomalies.

This paper provides a practical framework using surgical ethical principles for decision-making for both short- and long-term care for conjoined twins. The authors emphasize that conjoined twins are a truly unique population whose interests may not be fully understood. The care of conjoined twins forces the provider to question society’s understanding about what it means to be an “individual”. Using the doctrine of double effect, the authors propose the accepted construct that it is ethically impermissible to separate conjoined twins if this would require that one twin be sacrificed to salvage the life of the other. They also argue that separation should be considered obligatory if no major post-operative morbidity is expected for either twin. Finally, the authors highlight the important role that palliative care consultation may play in the care of conjoined twins starting in the prenatal period.

The ethics of separating conjoined twins: two arguments against [2]. Theor Med Bioeth. 2018;39:27-56.

The separation of conjoined twins is often not only a surgical challenge but can also pose a profound ethical dilemma. Cases can be categorized into three scenarios in which both, only one, or none of the twins have lethal anomalies. Most pediatric surgeons would support the separation of the latter group because the procedure confers what is conventionally regarded as an optimum in quality of life for both subjects. Separation of conjoined twins with only one potential survivor is more problematic, as the other twin is sacrificed for the benefit and survival of their sibling.

The author of this highly controversial essay argues that the separation of conjoined twins in early childhood is unethical because of the breach of assent and autonomy. According to the author, there is insufficient scientific evidence on the quality of life of conjoined twins who were separated versus those who were not. Conversely, some studies show that unseparated twins seem to have similar quality of life as those that were separated. Being permanently physically connected may compromise mobility, but the author argues that this may not only have negative consequences for the individual. Also, separation before the twins are mature enough to decide their fate for themselves impinges on self-determination. According to Kallberg, separation is an elective procedure that should be performed at a time when informed consent of both involved individuals is obtainable. In the text, he likens earlier separation to involuntary amputation. Some of the author’s arguments are similar to those in the discussion on early sex-assignment surgery. Although these arguments may seem radical and even disturbing to the reader, this article is highly thought-provoking, because it profoundly challenges conventional pediatric surgical teaching in the management of conjoined twins. While we disagree with the premise presented in the article, we appreciate the thought process it has stimulated for the reader.

Disagreement About Surgical Intervention in Trisomy 18 [3], Kochan et al. Pediatrics. 2021 Jan;147(1):e2020010686.

In the past two decades, there has been an evolving spectrum of life-sustaining treatments available to children with Trisomy 18. Noninvasive prenatal testing has also improved so that parents who choose to deliver a child with this diagnosis are more likely to pursue supportive measures to sustain a meaningful life. Previous attitudes viewing Trisomy 18 as a premorbid condition for which surgical intervention is either ineffective or inappropriate should be reevaluated.

In this ethical analysis, the authors represent varying viewpoints from experts in neonatology, pediatric anesthesia, pediatric bioethics, and pediatric palliative care. Additional commentary is written by the parent of an infant with trisomy 18 who is a physical therapist. A case study of a newborn child with Trisomy 18 who is ventilator dependent with severe reflux and feeding intolerance is presented and used to guide commentary. The fundamental ethical question is whether declining to perform anesthesia, tracheostomy, gastrostomy or fundoplication is justifiable on the basis of risk/benefit assessment or concerns about pain and suffering. The authors contend that although mortality does remain high in this population there are many children who have successfully undergone life-sustaining procedures and Trisomy 18 is no longer a universally lethal condition. As such, global refusal of surgical intervention can no longer be considered the standard of care. For children already being kept alive by life-sustaining therapy, these procedures may improve the quality of life and/or facilitate the transition to home care and should be considered. Although there may be a clear benefit for some patients, there are definite risks and all surgeries should not be offered to all patients. Discussion should be individualized and focus on accurate clinical and prognostic data, risks and benefits of surgery, and parental goals of therapy. Physicians should avoid declining care based solely on their own determination of the infant’s quality of life. In addition, pain can be mitigated in many ways for these patients as it is for other children undergoing these procedures. Conscientious objection to a parent’s request for surgery is a physician’s right but should be carefully weighed through the factors discussed and objecting physicians should always be willing to transfer the patient to another provider. A shared decision-making model between parents and medical providers is optimal and ethically justifiable.

Should we mandate a COVID-19 vaccine for children? [4], Opel et al. JAMA Pediatrics, 2020.

Little is known about the impact of COVID-19 vaccination on children. Given the processes we have in place for mandatory vaccination of children against other diseases, we will likely face the question of whether COVID-19 vaccination should be mandatory for children.

In this ethical analysis, the authors propose nine criteria to help frame the discussion with emphasis on three key factors: the vaccine, the disease, and vaccine implementation. They suggest prioritization of the following five criteria: evidence that the vaccine is safe for children, the substantial burden of disease to a significant subset of the population, vaccination of children must reduce the risk of transmission, vaccination should protect children from disease with at least comparable levels of effectiveness to other vaccines we require for children and vaccination should not be overly burdensome for children and families (i.e vaccine must be available, accessible and affordable). The authors discuss that while some of these criteria have already been met (i.e. we know that the burden of COVID-19 is significant for the world’s population) much work must be done to assure fulfillment of the other criteria. They advocate that prior to mandating COVID-19 vaccination for children, we need an enhanced understanding of the safety/risk profile for vaccinating children, a better understanding of the role of children in disease transmission, better awareness of whether the vaccine protects children, as well as clarification of the burdens children and families, will face with vaccine mandates. The authors highlight that our emphasis on any one criterion must remain flexible to account for evolution in our understanding of COVID-19 and the vaccine. They close by stating that our current understanding is too limited to provide guidance regarding the appropriateness of mandatory COVID-19 vaccination for children however integration of these criteria into future planning efforts may help ensure we provide children with the safest, most efficacious care.

Pediatric ethical issues during the Covid-19 pandemic are not just about ventilator triage [5], Haward et al. Acta Paediatr 2020 Aug;109(8):1519-1521.

Pediatric modification of the medically necessary time-sensitive scoring system for operating room procedure prioritization during the Covid-19 pandemic [6], Slidell et al J Am Coll Surg 2020 Aug;231(2):205-215.

Ethical, Moral, and Theological Insights into Advances in Male Pediatric and Adolescent Fertility Preservation [7], 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.

Single-cell Sequencing of Neonatal Uterus Reveals an Misr2+ Endometrial Progenitor Indispensable for Fertility [8], Saatcioglu et al Elife 2019 Jun 24;8.

Fertility Preservation Options in Pediatric Adolescent Patients with Cancer [9], Burns et al Cancer 2018 May 1;124 (9):1867-1876.

Fertility and Hormone Preservation and Restoration for Female Children and Adolescents Receiving Gonadotoxic Cancer Treatments: A Systematic Review [10], Corkum et al J Pediatr Surg 2019 Jan 22.

A Review of the Oncology Patient’s Challenges for Utilizing Fertility Preservation Services [11], Flink et al J Adolesc Young Adult Oncol 2017 Mar; 6 (1):31-44.

Fertility Preservation in Patients with Cancer: ASCO Clinical Practice Guideline Update [12], Oktay et al J Clin Oncol 2018 July; 36(19):1994-2001.

“Longshot” to “Fantasy”: Obligations to Pediatric Patients and Families When Last-Ditch Medical Efforts Fail Weiss and Fiester Amer J 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.

last ditch efforts
Descriptive text is not available for this image
visual abstract courtesy of Sarah Walker

What the “F”? [13], Chen et al Amer J Bioethics 2018. 18(1): 16-18.

Unilateral Withdrawal of Life-sustaining Therapy in a Severely Impaired Child [14], Miller et al Pediatrics 2018.142 (5):1-5.

Navigating Decisional Discord: The Pediatrician’s Role When Child and Parents Disagree [15], Sisk et al Pediatrics June 2017.

Ethical and End of Life Considerations for Neonates Requiring ECMO Support [16], Kirsch and Munson Semin Perinatol 2018 Jan 10.

Informed Consent in Decision-Making in Pediatric Practice [17], Katz et al Pediatrics 2016 Aug;138(2).

Responsible Surgical Innovation and Research in Maternal-fetal Surgery [18], Antiel et al Semin Fetal Neonatal Med 2017 May 24.

Ethics, Emotions, and the Skills of Talking About Progressing Disease with Terminally Ill Adolescents: A Review [19], Rosenberg et al JAMA Pediatr 2016 Dec 1;170(12):1216-1223.

International Variations in Application of the Best-Interest Standard Across the Age Spectrum [20], Laventhal et al J Perinatol 2017 Feb;37(2):208-213.

Parental Refusal of Surgery in an Infant with Tricuspid Atresia [21], Konet al Pediatrics 2016 Nov;138(5).

Two Infants, Same Prognosis, Different Parental Preferences [22], Antommaria et al Pediatrics 2015 May;135(5):918-23.

A Qualitative Study Exploring Moral Distress Among Pediatric Resuscitation Team Clinicians: Challenges to Professional Integrity [23], Thomas et al Pediatr Crit Care Med 2016 Jul;17(7):e303-8.

The ethics of neonatal research: an ethicist’s and a parents’ perspective [24], Janvier and Farlow Semin Fetal Neonatal Med 2015 Dec;20(6):436-41.

The darkening veil of “do everything” [25], Feudtner and Morrison Arch Pediatr Adolesc Med 2012 Aug;166(8):694-5.

Doctor, What Would You Do? An ANSWER for Patients Requesting Advice About Value-Laden Decisions [26], Tucker et al Pediatrics 2015 Oct;136(4):740-5.

Hospital Use in the Last Year of Life for Children With Life-Threatening Complex Chronic Conditions [27], Ananth et al Pediatrics 2015 Nov;136(5):938-46.

Please Do Whatever It Takes to End Our Daughter’s Suffering! [28], Clément de Cléty et al Pediatrics 2016 Jan;137(1):1-6.

References

  1. Thomas A, Johnson K, Placencia FX. An ethically-justifiable, practical approach to decision-making surrounding conjoined-twin separation. Semin Perinatol. 2018;42(6):381-385.  [PMID:30217664]
  2. Kallberg L. The ethics of separating conjoined twins: two arguments against. Theor Med Bioeth. 2018;39(1):27-56.  [PMID:29446009]
  3. Kochan M, Cho E, Mercurio M, et al. Disagreement About Surgical Intervention in Trisomy 18. Pediatrics. 2021;147(1).  [PMID:33298466]
  4. Opel DJ, Diekema DS, Ross LF. Should We Mandate a COVID-19 Vaccine for Children? JAMA Pediatr. 2021;175(2):125-126.  [PMID:32926083]
  5. Haward MF, Moore GP, Lantos J, et al. Paediatric ethical issues during the COVID-19 pandemic are not just about ventilator triage. Acta Paediatr. 2020;109(8):1519-1521.  [PMID:32364256]
  6. Slidell MB, Kandel JJ, Prachand V, et al. Pediatric Modification of the Medically Necessary, Time-Sensitive Scoring System for Operating Room Procedure Prioritization During the COVID-19 Pandemic. J Am Coll Surg. 2020;231(2):205-215.  [PMID:32473197]
  7. Ramstein JJ, Halpern J, Gadzinski AJ, et al. Ethical, moral, and theological insights into advances in male pediatric and adolescent fertility preservation. Andrology. 2017;5(4):631-639.  [PMID:28625022]
  8. Saatcioglu HD, Kano M, Horn H, et al. Single-cell sequencing of neonatal uterus reveals an Misr2+ endometrial progenitor indispensable for fertility. Elife. 2019;8.  [PMID:31232694]
  9. Burns KC, Hoefgen H, Strine A, et al. Fertility preservation options in pediatric and adolescent patients with cancer. Cancer. 2018;124(9):1867-1876.  [PMID:29370455]
  10. Corkum KS, Rhee DS, Wafford QE, et al. Fertility and hormone preservation and restoration for female children and adolescents receiving gonadotoxic cancer treatments: A systematic review. J Pediatr Surg. 2019;54(11):2200-2209.  [PMID:30773394]
  11. Flink DM, Sheeder J, Kondapalli LA. A Review of the Oncology Patient's Challenges for Utilizing Fertility Preservation Services. J Adolesc Young Adult Oncol. 2017;6(1):31-44.  [PMID:27529573]
  12. Oktay K, Harvey BE, Partridge AH, et al. Fertility Preservation in Patients With Cancer: ASCO Clinical Practice Guideline Update. J Clin Oncol. 2018;36(19):1994-2001.  [PMID:29620997]
  13. Chen D, Epstein E, Almarode S, et al. What the "F"? Am J Bioeth. 2018;18(1):16-19.  [PMID:29313770]
  14. Miller KE, Coleman RD, Eisenberg L, et al. Unilateral Withdrawal of Life-sustaining Therapy in a Severely Impaired Child. Pediatrics. 2018;142(5).  [PMID:30315121]
  15. Sisk BA, DuBois J, Kodish E, et al. Navigating Decisional Discord: The Pediatrician's Role When Child and Parents Disagree. Pediatrics. 2017;139(6).  [PMID:28562285]
  16. Kirsch R, Munson D. Ethical and end of life considerations for neonates requiring ECMO support. Semin Perinatol. 2018;42(2):129-137.  [PMID:29331209]
  17. Katz AL, Webb SA, COMMITTEE ON BIOETHICS. Informed Consent in Decision-Making in Pediatric Practice. Pediatrics. 2016;138(2).  [PMID:27456510]
  18. Antiel RM, Flake AW. Responsible surgical innovation and research in maternal-fetal surgery. Semin Fetal Neonatal Med. 2017;22(6):423-427.  [PMID:28551276]
  19. Rosenberg AR, Wolfe J, Wiener L, et al. Ethics, Emotions, and the Skills of Talking About Progressing Disease With Terminally Ill Adolescents: A Review. JAMA Pediatr. 2016;170(12):1216-1223.  [PMID:27749945]
  20. Laventhal N, Verhagen AAE, Hansen TWR, et al. International variations in application of the best-interest standard across the age spectrum. J Perinatol. 2017;37(2):208-213.  [PMID:27735929]
  21. Kon AA, Patel A, Leuthner S, et al. Parental Refusal of Surgery in an Infant With Tricuspid Atresia. Pediatrics. 2016;138(5).  [PMID:27940784]
  22. Antommaria AH, Collura CA, Antiel RM, et al. Two infants, same prognosis, different parental preferences. Pediatrics. 2015;135(5):918-23.  [PMID:25847802]
  23. Thomas TA, Thammasitboon S, Balmer DF, et al. A Qualitative Study Exploring Moral Distress Among Pediatric Resuscitation Team Clinicians: Challenges to Professional Integrity. Pediatr Crit Care Med. 2016;17(7):e303-8.  [PMID:27182784]
  24. Janvier A, Farlow B. The ethics of neonatal research: An ethicist's and a parents' perspective. Semin Fetal Neonatal Med. 2015;20(6):436-41.  [PMID:26497942]
  25. Feudtner C, Morrison W. The darkening veil of "do everything". Arch Pediatr Adolesc Med. 2012;166(8):694-5.  [PMID:22869401]
  26. Tucker Edmonds B, Torke AM, Helft P, et al. Doctor, What Would You Do? An ANSWER for Patients Requesting Advice About Value-Laden Decisions. Pediatrics. 2015;136(4):740-5.  [PMID:26416929]
  27. Ananth P, Melvin P, Feudtner C, et al. Hospital Use in the Last Year of Life for Children With Life-Threatening Complex Chronic Conditions. Pediatrics. 2015;136(5):938-46.  [PMID:26438707]
  28. Clément de Cléty S, Friedel M, Verhagen AA, et al. Please Do Whatever It Takes to End Our Daughter's Suffering! Pediatrics. 2016;137(1).  [PMID:26644491]
  29. Weiss EM, Fiester A. From "Longshot" to "Fantasy": Obligations to Pediatric Patients and Families When Last-Ditch Medical Efforts Fail. Am J Bioeth. 2018;18(1):3-11.  [PMID:29313768]
Last updated: September 1, 2021