Articles

Health Care Access Outcomes for Immigrant Children and State Insurance Policy. [1] Douglas KE et al., JAMA Netw Open. 2025 Dec 1;8(12):e2545826. PMID: 41324961.

Previous research demonstrates that immigrant children are more likely to be uninsured, have fewer preventive care visits, and more unmet health needs compared to non-immigrant children. These disparities are driven by structural barriers to care, such as state-level waiting periods and restrictions on eligibility for Medicaid and CHIP coverage. However, few studies have quantified how state-to-state variability in insurance policy inclusivity correlates with specific health care access outcomes for immigrant children.

This study used survey data collected from over 277,000 children’s caregivers between 2016 and 2022 and found that immigrant children had significantly worse health care access outcomes, including lower odds of uninterrupted insurance and having a usual source of care, and higher odds of unmet care needs. This study shows that inclusive state insurance policies are associated with improved access outcomes, even after adjusting for individual (sex, age, ethnicity, language, household income, etc.) and state-level (state median income and driver’s licensing based on immigration status) factors. By linking state-level health insurance eligibility policies to differences in access outcomes, the authors provide empirical evidence showing how structural policy decisions can improve or hinder access to essential care. This is directly relevant to pediatric surgeons because adequate insurance and access to primary care are prerequisites for timely referrals, preventive care, and continuity of care for surgical conditions. The growing anti-immigrant political messaging and federal action leaves immigrant children especially vulnerable to violations of justice and nonmaleficence. This study indicates that state insurance policy can function as a powerful ethical determinant of pediatric health care and may be used to improve equitable health care access for immigrant children.

Artificial womb technologies - Innovation at the edge of viability: Ethical considerations. [2] Paul J et al., J Pediatr Surg. 2026 Feb;61(2):162827. PMID: 41265706.

Extreme prematurity is defined as birth before 28 weeks of gestation and is associated with high morbidity and mortality. Current boundary of viability at 22-24 weeks comes with average 50% survival rate despite maximal intervention and with severe lifelong comorbidities. A major hurdle of viability has been the arrest of lung development from gas ventilation in extremely premature infants. The development of artificial womb technology (AWT) addresses this as a replication of the intrauterine environment to allow for continued fetal lung and overall development via gestation outside the maternal body. Preclinical trials have been promising and as we approach in-human trial application of this technology, AWT comes fraught with many ethical considerations which are explored in this narrative review article.

The authors examine an extensive array of ethical considerations of AWT as summarized here. As with any novel procedure/technology, potential benefits must be weighed against risks and unknown long-term effects. The role of AWT in parental autonomy and reproductive rights should be carefully managed with its potential for coercion and bearing in discussion of abortion. Justice is relevant when considering equitable access to AWT and its potential to exacerbate pre-existing health disparities. Further discussion is also warranted on defining the role of new entities that emerge from AWT – legally, morally, and socially/culturally. As clinical translation of AWT becomes fast-approaching, the authors urge prioritization of practical ethical concerns most immediately relevant such as in human subjects research – ensuring rigorous oversight, transparency, and protection of those involved. They also point towards other resource-intensive and ethically complex fields (ex. pediatric oncology, transplantation, maternal-fetal surgery) as resources to reference in navigating the considerations above. Lastly, they encourage the active involvement of diverse stakeholders including patients and families, clinicians, researchers, and ethicists as AWT continues to develop to ensure responsible ethical application.

Ethics of Transition of Care of Pediatric Surgical Patients to Adult Providers. [3] Carlisle EM et al., J Pediatr Surg. 2025 Apr;60(4):162228. Epub 2025 Jan 31. PMID: 39919340.

Advances in medical care have drastically improved survival rates for complex congenital conditions, some of which were historically terminal diagnoses. We are now seeing these patients live into adulthood, and complex needs arise as they age, some of which we are only still discovering. This presents unique challenges to pediatric and adult physicians as patients approach an age of transition where both providers feel deficient in resources and knowledge to care for these patients. National medical organizations have provided framework and resources to facilitate safe and smooth transition of care, including guidance in navigating changing health policy and healthcare coverage. There is limited ethical guidance for this process which presents unique challenges for patients, physicians and caregivers, often leading to moral questions and distress.

The APSA Ethics and CAPS Ethics Committees collaborated to explore the ethical challenges surrounding transition of care. Using core ethical principles: non-maleficence, beneficence, justice and equity, and autonomy and assent, they facilitated a discussion around this challenging, evolving process and identified important goals and steps for transition. This perspective was then applied to a previously described transition plan, Got Transition, to enhance its applicability, including the use of other toolkits and questionnaires to ensure a smooth transition. Key points include involving all stakeholders in decision-making, identifying potential barriers to success, empowering and educating patients and caregivers, and following through transitions to ensure we are improving the process for future patients. The use of an ethical framework to achieve these goals can ensure optimization of physician, patient and caregiver participation, comfort and experience with the process. Ongoing barriers to optimal transition include patients who lack capacity to participate in their decision making and aging parents. In these situations, we are obliged to know available social, legal and advocacy resources to optimize patient and caregiver experience, while continuing to provide the best care possible. Key takeaways include starting the process early, involving patients and caregivers, creating an individualized, patient-centered plan, considering integration of existing organized pathways or toolkits, and emphasizing active, collegial effort between the adult and pediatric providers so that all stakeholders are comfortable. We must support each other through this process to mitigate the impact of moral distress that is bound to accompany any change in the care we provide our patients and prevent contribution to diminished physician well-being and burnout.

Critical Care Physicians’ Perspectives on Nudging in Communication. [4] Soled DR et al., JAMA Netw Open. 2025 Sep 2;8(9):e2531199. PMID: 40928779.

The physician-patient/caregiver relationship is built upon trust, and a critical component of building trust with a patient is communication in every form. Trust is what allows patients to entreat their care to medical services; it has been positively correlated with patient satisfaction, and it increases the likelihood of adherence to given treatment regiments. The prime tools used by physicians to help build this trust are the words chosen in the clinical encounter, but these words are subject to physician bias. In the decision-making context, a nudge is defined as any aspect of physician communication with the patient that may influence treatment choice or behavior in a predictable way without restricting the choice of any options or directly recommending a treatment path. Naturally, nudging is influenced by a physician’s biases including the type of treatment being presented. However, how a physician’s demographics influence nudging, whether the provider setting (ICU vs. PICU e.g) influences how nudging is performed, and the ethical appropriateness of using nudging is not well understood.

Soled et al in their article “Critical Care Physicians’ Perspectives on Nudging in Communication”(1) sought to characterize the situations and ways in which physicians nudge their patients. Using qualitative interviews, a random sampling of critical care physicians in both NICU, PICU, and adult ICU settings at 3 academic institutions in Boston was conducted. Participants were asked to explain how they present treatment decisions to patients, reflect on the extent to which they ‘nudge’ patients, and explore the ethical implications of nudging. Their results found that most physicians view nudging as a necessary part of medical communication and that it is more effective and appropriate in certain clinical situations. On the other hand, providers demonstrated ethical concerns about the use of nudging, fearing that it may rob patients of decision-making autonomy, or sow distrust in the relationship with stakeholders if perceived as aggressive. They also discovered that nudging in pediatric ICUs had a more empathetic character to it than in adult settings, women were more likely to use empathetic approaches in their word choice as opposed to men who were more data driven, and junior faculty had stronger ethical concerns than more established physicians. While it may be common knowledge that physicians can influence patient decision making, the work of Soled et al helps to define specific ways in which nudging occurs as well as explore the differences in how nudging is practiced across settings and demographics of the practicing physicians.

The Role of “The Talk” and Its Themes in Black Youths’ Anticipatory Stress of Police Brutality [5] Webb L et al., Pediatrics. 2025 Jan 1;155(1):e2024067065. PMID: 39663562

Police brutality is considered a public health crisis among the youth in the United States. Damaging police encounters have been shown to negatively impact the mental health of youth. Black youth are significantly more likely to experience police brutality than white youth, and therefore are at higher risk for the associated psychological impacts. Research has shown the link between experiencing police brutality and subsequent mental health damage, and researchers are beginning to explore the ‘anticipatory stress’ of police brutality. Anticipatory stress is defined as the anticipation of an exposure and the associated stress response. Black adults and youth both report higher rates of anticipatory stress of police brutality compared to their white peers. Care givers have found the need to prepare youth for potential police encounters, giving children “the talk” about how to navigate police encounters and brutality. While “the talk” is a well reported concept, the impact of “the talk” on anticipatory stress is not.

Given the disproportionate risk of police brutality among Black youth, this study characterized the impact of “the talk” specifically in this at-risk population. The authors found that having “the talk” significantly lowered the incidence of direct and indirect anticipatory stress of police brutality. This suggests that “the talk” is protective against the mental health impacts of negative police encounters. Furthermore, the researchers found that messaging played an important role. For example, messaging of obedience and personal safety was associated with less anticipatory stress than messaging of obstinance. These findings are consistent with what is known about cultural and racial socialization, that educating youth about bias and supporting them may be more protective for their mental health than preparing them for the defensive. The growing literature demonstrating the importance of “the talk” emphasizes the essential role of supportive and honest adult interactions in at risk youths’ lives. Cultivating safe spaces for youth, particularly Black youth, to have “the talk” has the potential to mitigate their anticipatory stress of police brutality and ultimately have a positive impact on their mental wellbeing.

Moral Distress and Pediatric Palliative Care [6] Jeong S et al., Children (Basel). 2024 Jun 21;11(7):751. PMID: 39062203

Moral distress is a psychological experience of unease, injury or conflict derived from the inability to do what one believes is right due to organizational, institutional or situational circumstances. While it was first described in the 1970s, the demands of the COVID-19 pandemic exacerbated moral distress across the healthcare workforce, especially in pediatric intensive care units (ICUs). The literature describes many sources of moral distress in the pediatric ICU such as acute and chronic emotional stressors from end-of-life decisions to having limited resources to team and/or family conflicts. Pediatric palliative care (PPC) clinicians are specially trained to navigate the emotionally and morally complicated situations that arise in the pediatric ICU, thus offering tools for mitigating moral distress among caretakers.

The authors describe their experiences in a free-standing, quaternary pediatric hospital with an actively integrated PPC team. They first reframe the role of PPC clinicians as providers specially trained to clarify patient/family goals and facilitate difficult discussions regarding advanced planning or therapies in the setting of pediatric critical illness. Second, they emphasize the importance of PPC as an aid for communication. Miscommunication, misunderstanding and unrealistic expectations are major sources of moral distress that the authors found to be minimized by early involvement of the PPC team. Next, the authors recognize the unique PPC “frame of reference” of holistic management of individual patients. Clinicians and families each intend to do what is ‘best’ for the patient, but their definitions of such may be at odds, causing moral distress. PPC teams can provide plurality in what may seem like conflicting situations; thereby generating a collaborative management plan with respect amongst all parties. It is also noted that PPC providers are often trained in bioethics, and therefore possess the skills to navigate challenging cases using bioethical principles and theories. Finally, the authors stress the importance of moral distress education. PPC clinicians can help other providers recognize, understand and address sources of moral distress and moral distress itself. This institution’s early and regular integration of PPC proves to be a feasible intervention for navigating morally challenging situations and mitigating the subsequent moral distress experienced amongst care teams.

Do Reasons Matter? Navigating Parents’ Reasons in Healthcare Decisions for Children [7] Moore B et al., Am J Bioeth. 2024 Aug 20:1-16. Epub ahead of print. PMID: 39163506.

Reasons for parental decisions regarding their child’s healthcare have always been of important - generally in a pragmatic sense for effective communication and identification of opportunities for compromise or persuasion, particularly when these decisions conflict with clinician recommendations. In contrast, parental reasoning is largely considered irrelevant when considering the ethics of the situation. This can be seen in ethical frameworks regarding boundaries of intervention such as Diekema’s harm principle which is operationalized in Gillam’s zone of parental discretion (ZPD). The ZPD is defined as “the ethically protected space where parents may legitimately make decisions for their children, even if the decisions are sub-optimal for those children”. It highlights the gap between optimal vs harmful decisions and holds that certain decisions beyond the ZPD threshold would be of such harm to the child that they would warrant intervention regardless of reasons. This keeps in mind concern that sympathetic reasons may justify harmful decisions and that maintaining focus on consequences keeps ethical discussion centered on the child’s interests and well-being. However in practice these principles are not so clear-cut and parents’ reasons do blur ZPD boundaries and ethical decision-making, consciously and unconsciously.

This article explores a series of scenarios that highlight how different parents’ reasons influence ethical decision making in pediatric medicine. All scenarios keep the clinical condition and prognosis fixed but with differing reasons for a parent’s refusal of recommended care. The different reasons for refusal stimulate discussion on how ethical judgement is subsequently swayed per individual scenario. These reasons include: an absolute/relative lack of resources, balancing of social roles and burdens, differing opinions of life quality, mistrust in the healthcare system, and idiosyncratic faith-based reasons. Each scenario evaluates how the reason would influence a clinician’s view on whether the parent’s refusal of care would lie in or out of the ZPD, requiring intervention. Parents’ reasons may also draw attention to overarching guidance principles of ethical concern and lead to more justice-based interventions. The article highlights how parental reasons already influence real world clinical and ethical judgements and should be incorporated into care discussions, rather than left to operate in the background without conscious recognition. The reader is invited to reflect on his or her own personal ethical biases of parents’ reasons as well as biases of the larger clinical community.

Responding to Medical Errors — Implementing the Modern Ethical Paradigm. Gallagher TH, et al. N Engl J Med. 2024 Jan 18;390(3):193-197. Epub 2024 Jan 13. PMID: 38226840.

Management of adverse events and medical error is part of every practicing pediatric surgeon’s job. Many of us can recall specific instances where we were involved in a medical error, and how we dealt with it. While such recollection may rekindle a deep emotional response, these experiences can also bring knowledge, discernment, and change to our individual armamentarium and to healthcare as a whole in the pursuit of improvement in future patient care. Gallagher and Kachalia effectively use a story of a delay in diagnosis of breast cancer as they build the case for implementing a coordinated, programmatic system for managing medical errors and adverse events. The flaws of the traditional construct (where the “captain of the ship” bears sole accountability for patient outcome) are clearly articulated, and an outline of how that paradigm has shifted, and what has driven the shift is provided. Barriers to implementation of a communication and resolution program (CRP) and how CRPs support the “ethics of accountability” are detailed.

The figure in this article outlines a six-step model for responding to harmful medical errors, enumerating both ethical rationale for, and common barriers to each step. The case presented in the opening paragraph is used to provide specific illustrative examples. These steps include clinician-driven reporting of an event to their organization, prompt and ethical communication with patients and families, comprehensive support for patients, psychological support for physicians, event analysis and prevention planning, and reconciliation. Two key components of CRPs are emphasized: minimization of harm to the patient and the challenges to carrying out the necessary steps. While healthcare providers should have the skills needed to compassionately guide the patient and their family through a difficult outcome, it requires the entire healthcare system (institutional leaders, legal partners, national legislators, and liability insurers) to carry out the remainder of the steps in these programs. Attaining this level of coordination in policy implementation is challenging. While this may be achievable in a large healthcare system, the authors notes the difficulty that smaller, rural, urban, and safety net hospitals may experience garnering the necessary support. Measuring the success of these programs poses an additional challenge, the authors conclude that regulatory mandates are right around the corner, when deployment of evidence-based CRPs will not be optional.

Access to Transplantation for Undocumented Pediatric Patients[8]Charnaya O, et al. Pediatrics. 2020 Jul;146(1):e20193692

To supplement the October 25th APSA Connect and Share APSAsode, the APSA Ethics Committee would like to highlight this article. Pediatric surgeons are being called upon to care for increasing numbers of undocumented immigrant children. Many undocumented immigrant families cannot afford the care recommended for their children. This issue may be especially pronounced when the care needed involves a scarce resource. In this paper, the authors analyze the ethical, legal, and policy issues that occur as we consider whether it is ethically appropriate to provide undocumented immigrant children with organ transplantation.

In this article, the authors discuss a 5-year-old with steroid-dependent nephrotic syndrome diagnosed early in life in Honduras. The child had limited response to medical management and was advised to return home to die peacefully. The child’s family subsequently crossed the US border and sought care at an ED where medical management was resumed and hemodialysis (HD) was initiated. The patient suffered multiple complications of HD, and renal transplantation was eventually the next indicated procedure. However, the patient’s state insurance did not cover transplant services. The 6 co-authors of the paper engage in a thoughtful debate regarding whether undocumented children currently residing in the US with end-stage organ failure should have access to transplantation. Diverse arguments are presented- ranging from: Yes, immigration status does not reduce the patient’s value as a human or our obligation to them as a patient; to No, without demonstrated ability and financial resources to care for the organ, maximal good is not achieved and the patient is placed at increased risk of harm from rejection or increased difficulty with subsequent transplantation due to immunologic sensitization; to Yes, many noncitizens participate in the US transplantation system as donors, so they should be offered the opportunity to be recipients (i.e. reciprocity). While many pediatric surgeons may not be tasked with determining whether to list a given patient for transplantation, most face challenges with determining how to ethically and safely care for undocumented immigrant children. This paper provides ethical frameworks that can be easily extrapolated to general pediatric surgical practice.

Professional Civil Disobedience-Medical-Society Responsibilities after Dobbs[9]. Wynia MK. N Engl J Med. 2022 Sep 15;387(11):959-961. Epub 2022 Aug 24.

The Code of Medical Ethics of the American Medical Association states that “In some cases, the law mandates conduct that is e The Code of Medical Ethics of the American Medical Association states that “In some cases, the law mandates conduct that is ethically unacceptable. When physicians believe a law violates ethical values or is unjust they should work to change the law. In exceptional circumstances of unjust laws, ethical responsibilities should supersede legal duties.” Many clinicians feel that the Supreme Court decision in Dobbs v. Jackson Women’s Health Organization has resulted in legal changes that may preclude safe care of patients. thically unacceptable. When physicians believe a law violates ethical values or is unjust they should work to change the law. In exceptional circumstances of unjust laws, ethical responsibilities should supersede legal duties.” Many clinicians feel that the Supreme Court decision in Dobbs v. Jackson Women’s Health Organization has resulted in legal changes that may preclude safe care of patients.

In this perspective piece, the author reflects upon what medical professionals should do when they feel that a law requires them to harm patients. The author discusses how the recent Supreme Court case Dobbs v. Jacksons Women’s Health Organization has impacted abortion access in the US and highlights statements from the American Academy of Family Physicians, the American College of Physicians, and the American College of Obstetricians regarding the role of government in medical decisions made between patients and clinicians. The author presents ideas for how physicians may work within the law to advocate for safe medical care for patients, but also raises the question of whether there is a role for professional civil disobedience in responding to these issues. Professional civil disobedience is defined as “a public, nonviolent, conscientious yet political act contrary to law, carried out with the aim of bringing about a change in an unjust law.” While some may argue that such an approach may lead to chaos or anarchy, the author suggests that should a professional group decide to support disobedience of an unjust law, the result may eventually be reinforcement of social cohesion, increased trust in the profession, and avoidance of fatal errors. The author presents historical examples of when physicians did not engage in civil disobedience and followed unethical government mandates - forced sterilizations in the US and Nazi Germany, police brutality under apartheid in South Africa- as well as when they did - Dutch physicians forfeiting their licenses as opposed to practicing under Nazi rule. The author concludes with the suggestion that physicians carefully consider whether and how they may wish to engage organized medical associations in professional civil disobedience to assure safe access to abortion and other reproductive services in the US.

Understanding the effectiveness of consent processes and conversations in pediatric surgery: A systematic-scoping review[10]. Atsaidis Z et al. J Pediatr Surg. 2022 Dec;57(12):834-844.

Informed consent is one of the pillars of medical care, and is particularly nuanced in the pediatric population, where proxy decision-making is the norm. A large body of literature exists on the topic of informed consent in general, and while the definition of informed consent and its key elements is variable, it is generally agreed that it must contain general information about the procedure and discussion of risks, benefits, and alternatives. Furthermore, the consenting individual (patient or proxy) must be properly informed, have capacity to give consent, and do so voluntarily. The process is complex and a variety of methods of obtaining informed consent have been studied. Despite this, methods of obtaining consent have rarely been explored and compared in the literature, and there is relatively little published on the topic specifically in pediatric surgery, especially with regard to the use of proxy decision-makers. This leads to a perceived lack of knowledge regarding best practices, and current guidelines and recommendations generally reflect the perspectives of legal stakeholders or clinician-experts, with less emphasis on the perspectives of other key stakeholders including patients/families and other healthcare providers. This study therefore aims to review the literature concerning informed consent to explore the definition of informed consent in pediatric surgery, characteristics of an effective consenting process, and opportunities for improvement, with attention to four key stakeholder groups: patients and their families, surgeons and surgical trainees, other healthcare providers, and hospital administration and professional policymakers.

This is a systematic scoping review of literature regarding the informed consent process in the pediatric surgical population. Over 5000 articles were screened, and 43 articles were included in the review. This is the first large-scale review of the informed consent process within the pediatric surgical population with consideration of multiple stakeholder perspectives. The review recognizes the complexity of evaluating the informed consent process and emphasizes that multiple criteria and elements should be assessed in quality assessment. Elements and strategies widely considered to be effective include individualized communication, providing opportunity for questions, adequate timing, having multiple conversations and encouraging patient participation/shared decision-making. The use of multimedia tools to supplement the process has also been evaluated and is felt to be particularly useful by non-surgeon healthcare providers. Characteristics of ineffective informed consent conversations included low parental understanding and risk recall (most often identified by patients/families), high parental anxiety (noted only by parents/families), inadequacy of the consent form (most commonly identified by surgeons), and biased information. Stakeholders agreed that the informed consent process is inconsistent and therefore emphasized finding a balance between consistency of the process and individualization of discussions. Key recommendations for pediatric surgeons for effective informed consent process include recognition of the novelty of the situation for families, the power imbalance inherent to the interaction, emotional vulnerability of parents, and recognition of parental anxiety. The process and documentation currently focuses on proxy decision-makers, but should also include specific consideration of the child and their rights. The purpose of the consent form should be clarified. Emphasis needs to be placed on individualized communication, interpersonal relationships, and consideration of the dialogue as the essential part of the process, with use of supporting materials as needed to supplement the conversation (ideally provided ahead of time). In order to improve consistency and quality of the informed consent process, consideration must be given to the perspectives of all stakeholders.

Paediatric surgeons’ current knowledge and practices of obtaining assent from adolescents for elective reconstructive procedures[11]. Lai K et al. J Med Ethics. 2022 Dec 21;jme-2022-108525. Online ahead of print.

Care for the pediatric patient is associated with the unique ethical issue of assent, particularly in the adolescent patient. While informed consent remains the responsibility of the parent or legal guardian, who is generally expected to use the best interest standard in decision-making, involvement of the child in medical decision-making provides a sense of agency and attempts to empower the child. The AAP issued a statement in 2016 in support of regular inclusion of assent whenever appropriate and inclusion of the patient in a developmentally appropriate manner. The four AAP elements of assent include facilitating a developmentally appropriate awareness of the nature of their condition, conveying what patients can expect with tests and treatment, performing a clinical assessment of the patient’s understanding of the situation and the factors that may influence their response (including inappropriate pressure/coercion), and soliciting expression of the patient’s willingness to accept the proposed treatment or intervention. Patient dissent should be taken seriously when proposed interventions are non-essential and/or can safely be deferred. The present study aimed to define current knowledge of these AAP recommendations by pediatric surgeons, and examine surgeon practices regarding assent for elective reconstructive procedures.

While there is a substantial body of literature concerning assent in other pediatric specialties, such as oncology, there are fewer studies looking at assent within elective pediatric general surgical care. The majority of the literature focuses on parental perspectives. This appears to be the first study focusing specifically on pediatric surgeons’ perspectives. A survey was disseminated to APSA members (surgeons and fellows) to assess knowledge and attitudes regarding assent and current practices for elective reconstructive procedures (e.g. chest wall, abdominal/intestinal, pelvic). There were 220 responses and the majority were familiar with the concept of assent, with 50% having formal training. Despite a high level of understanding of assent in the elective setting, the results indicated wide variation in practice and application. The greatest barriers to assent were identified as patient cooperation/understanding, parental cooperation, and complexity of the procedure; it was also noted that elective does not equate to unnecessary. Of the four AAP statement elements, fewer surgeons considered or used the recommendation to seek the adolescent’s willingness to proceed. This study demonstrates that assent for elective procedures in adolescents is interpreted and applied variably. The authors suggest further education and training for pediatric surgeons in how to effectively engage adolescents in the decision-making process.

Communication and ethical considerations for fertility preservation for patients with childhood, adolescent, and young adult cancer: recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group[12]. Mulder RL, et al. Lancet Oncol. 2021 Feb;22(2):e68-e80.

Current treatment protocols for pediatric cancer have resulted in 5-year survival exceeding 80%. Due to significant increase in pediatric cancer survivors, the focus has shifted to effects of treatment and quality of life for survivors. Both female and male pediatric cancer survivors are at increased risk of infertility if exposed to gonadotoxic chemotherapy or high dose radiation. Studies have shown that patients and their parents value future fertility but also show significant variability in counseling of potential effects of treatment. Clinical guidelines for fertility preservation vary in rigor and access to preservation is variable. There are numerous ethical issues to address including access to oncofertility programs, need for invasive procedures, age of involvement of minors in decision making, lack of universal insurance coverage for collection and storage, cultural and religious barriers, and inability to guarantee future fertility with harvested tissue from prepubertal children.

The authors reviewed the literature on communication of infertility risk in pediatric and young adult cancer treated with gonadotoxic therapies. The paper is a collaboration of the PanCareLIFE Consortium and the Effects of Childhood Cancer Guideline Harmonization Group. The authors found that most clinical practice guidelines lack rigor and the authors developed guidelines with recommendations for communication methods around fertility preservation in childhood, adolescent, and young adult cancer. Among other recommendations, the authors found that a barrier to healthcare provider discussion was inadequate knowledge about current status of reproductive health technologies. Providers should be familiar with evidence based recommendations and institutional policies. Patient autonomy should be prioritized when possible as well as involvement of families. Age appropriate information should be provided in a clear, professional, neutral and emphatic manner as well as provision of current written or on-line resources. Furthermore, the panel of experts formulated considerations for ethical guidelines around these procedures. The authors put forth that the informed consent process should be dynamic and divided into two stages: at initial diagnosis and after therapy in children of developmentally appropriate age. The authors also stress the need to obtain consensus with patients and their families about posthumous handling and disposal of gametes and preserved tissue.

White Paper: Oncofertility in Pediatric Patients with Wilms Tumor [13]. Van der Perk ME, et al. Int J Cancer. 2022 Sep 15;151(6):843-858. Epub 2022 May 11.

Current treatment protocols for pediatric cancer have resulted in 5-year survival exceeding 80%. Due to significant increase in pediatric cancer survivors, the focus has shifted to effects of treatment and quality of life for survivors. Both female and male pediatric cancer survivors are at increased risk of infertility if exposed to gonadotoxic chemotherapy or high dose radiation. Studies have shown that patients and their parents value future fertility but also show significant variability in counseling of potential effects of treatment. Clinical guidelines for fertility preservation vary in rigor and access to preservation is variable. There are numerous ethical issues to address including access to oncofertility programs, need for invasive procedures, age of involvement of minors in decision making, lack of universal insurance coverage for collection and storage, cultural and religious barriers, and inability to guarantee future fertility with harvested tissue from prepubertal children.

The authors provide an overview of the evidence regarding future infertility concerns after Wilms tumor (WT) treatment, and address relevant ethical concerns. The paper reflects a collaboration among many authors representing both Children’s Oncology Group (COG) and Societe Internationale D’oncologie Pediatrique (SIOP). The young age at diagnosis and treatment of WT can make fertility preservation prior to treatment particularly difficult. There have been several surveys identifying the attitudes of parents and adolescents regarding fertility preservation. It appears that despite knowledge of risks infertility, only about 20% have been willing to take actions to preserve fertility. Their concerns include not wanting to delay treatment, their physician’s advice against delaying treatment, concerns about potential effects of cancer therapy on future offspring, feeling too young to make such a decision, cost, and others. It is also well established that many patients regret deciding not to pursue fertility preservation. SIOP treatment regimens usually start with preoperative chemotherapy, but since these do not contain the gonatotoxic alkylating agent cyclophosphamide, there exists a “window” of time to consider fertility preservation before postoperative chemo and radiation therapy, and the gonadal procedure may be combined with tumor nephrectomy. COG protocols mandate initiation of chemotherapy within 14 days of surgery / biopsy, which may shorten the time to consider fertility preservation. The impact of radiation therapy alone is difficult to study, but certainly has negative effects on fertility related to cumulative dose to ovary and uterus and the age of the patient (younger, prepubertal girls do better, perhaps due to more follicular reserve). In males, there is significant prevalence of infertility related to cyclophosphamide as well.

There are several ethical considerations. It is important to consider cultural and religious views. The harvest involves an invasive procedure and the harvested tissue contains gametes. Most WT patients are minors, and there is no universal consensus at what age a child is competent to make medical decisions. Procedural and storage costs are not universally covered by insurance programs. Additionally, there are issues regarding the handling of the tissue after the death of a child with cancer. Finally, the success of autotransplanted tissue to lead to a successful future pregnancy is not guaranteed. In conclusion, the authors’ message is that early consultation with a fertility preservation team is critically important to minimize future patient and family regret, and thus provide the best and most holistic care possible. Parents are already carrying an emotional burden, and it should not be assumed that they will initiate the discussion regarding fertility preservation.

Ethical considerations in the use of artificial womb/placenta technology [14]. Werner KM and Mercurio MR. Semin Perinatol. 2021 Nov 9;151521.Online ahead of print.

Morbidity and mortality at the limits of viability are frequently attributable to pulmonary immaturity and ventilator associated lung injury. Significant progress is being made in animal studies using artificial placenta and artificial womb technology. As this technology nears human clinical trials several ethical and legal issues need to be considered.

Werner and Mercurio provide an outline of the major ethical considerations associated with this emerging technology. First and foremost the authors consider the moral status of human beings supported by this technology. Should humans supported by an artificial womb or placenta should be afforded the same moral status as a fetus or as a neonate? Clearly, there is significant disagreement over the moral status of a fetus. Yet, the authors argue that until some basic concept of fetal personhood is agreed upon, it will be difficult to make decisions regarding the appropriate use of this technology, to whom it should be offered, and criteria for termination of artificial womb/placenta technology. The authors emphasize that these decisions will become even more important should this technology ultimately be used to decrease the limits of viability. This article also addresses debates over terminology, appropriate use criteria and parental rights. While this article does not suggest definitive answers to these questions, it is thought-provoking and reinforces how much work there is to be done prior to implementation of this technology in humans.

Ethical implications of the shifting borderline of viability [15]. Lantos JD. Semin Perinatol.2021 Nov 9;151531. Online ahead of print.

The limits of viability is one of the most challenging topics in neonatal medicine and surgery. Gestational age has traditionally been used as a predictor of mortality and morbidity risk. Moral controversy exists related to treatment or non-treatment of extremely premature infants. The American Academy of Pediatrics (AAP) has stated that non-initiation of resuscitation is acceptable for newborns born at less than 23 weeks gestation. (MacDonald, 2002) And in 2003, a survey of 666 US neonatologists reported that only 4% would resuscitate a 22-week-old newborn less than 500g (Singh, 2007). Yet, as Dr. Lantos illustrates in his recent Seminars in Perinatology article, the survival rate for babies born at 22 weeks is very good (30% - 70% depending on the study) with neurodevelopmental outcomes similar to babies born at 23 and 24 weeks of gestation.

Historically, much of the ethical discourse surrounding viability has focused on the legality of abortion at this gestational age, yet many other important ethical questions exist. Most tertiary centers still actively withhold treatment from babies born at 22 weeks, but should they? Is it unjust that similar babies are treated so differently at different centers? Common concerns regarding the treatment of extremely premature infants include: too many of the survivors will have severe neurocognitive impairment, parents don’t want such treatment, and finally that the cost is too high. Lantos argues that none of these concerns are valid. Improvements in neonatal medicine and surgery have drastically improved the outcomes for babies born at 22 weeks, parents largely want these treatments, and the cost-effectiveness of such treatments is very favorable. Given the significantly improved outcomes of babies treated at 22 weeks, society recommendations and hospital policies that discourage treating these infants have become ethically suspect.

An Ethically Justifiable, Practical Approach to Decision-Making Surrounding Conjoined-Twin Separation [16], 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 [17]. 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 [18], 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? [19], 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 [20], Haward MF, 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 [21], 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 [22], Ramstein et al Andrology 2017 (5): 631–639.

With the rates of survivorship for children and adolescents diagnosed with cancer improving significantly, the focus has shifted towards ensuring a better quality of life for survivors which includes addressing 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 a Misr2+ Endometrial Progenitor Indispensable for Fertility [23], Saatcioglu et al Elife 2019 Jun 24;8.

Fertility Preservation Options in Pediatric Adolescent Patients with Cancer [24], 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 [25], Corkum et al J Pediatr Surg 2019 Jan 22.

A Review of the Oncology Patient’s Challenges for Utilizing Fertility Preservation Services [26], 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 [27], 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

visual abstract courtesy of Sarah Walker

What the “F”? [28], Chen et al Amer J Bioethics 2018. 18(1): 16-18.

Unilateral Withdrawal of Life-sustaining Therapy in a Severely Impaired Child [29], Miller et al Pediatrics 2018.142 (5):1-5.

Navigating Decisional Discord: The Pediatrician’s Role When Child and Parents Disagree [30], Sisk et al Pediatrics June 2017.

Ethical and End of Life Considerations for Neonates Requiring ECMO Support [31], Kirsch and Munson Semin Perinatol 2018 Jan 10.

Informed Consent in Decision-Making in Pediatric Practice [32], Katz et al Pediatrics 2016 Aug;138(2).

Responsible Surgical Innovation and Research in Maternal-fetal Surgery [33], 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 [34], 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 [35], Laventhal et al J Perinatol 2017 Feb;37(2):208-213.

Parental Refusal of Surgery in an Infant with Tricuspid Atresia [36], Konet al Pediatrics 2016 Nov;138(5).

Two Infants, Same Prognosis, Different Parental Preferences [37], 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 [38], 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 [39], Janvier and Farlow Semin Fetal Neonatal Med 2015 Dec;20(6):436-41.

The darkening veil of “do everything” [40], 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 [41], 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 [42], Ananth et al Pediatrics 2015 Nov;136(5):938-46.

Please Do Whatever It Takes to End Our Daughter’s Suffering! [43], Clément de Cléty et al Pediatrics 2016 Jan;137(1):1-6.

References