65: Ethical Dilemmas and Considerations

This chapter will take approximately 14 minutes to read.

By Karen M. Doersch, MD, PhD 1  & David A. Diamond, MD 2, 3
  1. Department of Urology, University of Rochester Medical Center, Rochester, NY, USA
  2. Department of Urology, Pediatric Urology, University of Rochester Medical Center, Rochester, NY, USA
  3. Pediatrics, Golisano Children's Hospital, Rochester, NY, USA

Introduction

All of pediatric urological care involves the application of ethical principles on a daily basis. Occasionally, those principles are spotlighted as we push therapeutic envelopes further, societal thinking evolves or medical advances challenge legal (or even political) thinking. Gender affirming therapies represent such an arena as care for the transgender population has developed rapidly and unevenly throughout our country. Similarly, care for neonates and infants with disorders of sexual differentiation (DSD) has become a focus for social and political activism, potentially influencing treatment. Both areas have assumed ethical importance for the principles upheld.

As we will discuss, the ethical concepts guiding transgender care—justice, beneficence and autonomy—are magnified. For neonates and infants with DSDs, for whom gender-related surgery is considered, these same principles apply but with different, powerful tensions. For both, informed consent takes on particular importance.

Ethical Principles

Beneficence

In biomedical ethics, the concept of beneficence encompasses actions intended to provide net benefit to a patient.1 These actions include protecting patient rights, rescuing a patient from danger, and providing treatment to reduce patient discomfort. Beneficence means that those treatments with which the benefits outweigh the harms should be offered to patients. When the goal of medical treatment is to have an overall positive effect on patient health it is sometimes unclear what treatments may best benefit a patient, in which case beneficence may require shared decision making, wherein a medical practitioner presents options and the patient and practitioner choose together the best course of action.

Paternalism is the concept that an individual with power (in this case a medical professional) relies on their own judgement in making decisions for someone with less power (in this case the patient).1 Paternalism can result if the principle of beneficence is followed too closely and subjectively. In pursuing beneficence, a medical practitioner might allow their judgement of the most beneficial course of action to supersede patient preferences.2 Thus, while it is important to uphold the principle of beneficence, it is equally important to balance it with other ethical principles discussed later in the chapter.

Non-Maleficence

Non-maleficence is the ethical principle describing not inflicting harm on a patient.1 In biomedical ethics, patients ideally are not hurt by their medical care. Harm is a broad term, which includes offense, annoyance, discomfort, or other negative outcomes which may or may not occur due to wrongdoing. Unlike beneficence, which involves actively doing good or preventing harm, non-maleficence involves avoiding actions which might cause harm or balancing the risks and benefits of a given action. The principle of non-maleficence requires that healthcare providers not impose harm or risks of harm. Harm can occur both unintentionally as a result of actions or inactions or can be a result of reckless behavior that puts a patient at risk. It is the responsibility of healthcare providers to avoid hasty decision making and rash behavior as well as to anticipate potential negative outcomes of therapy and attempt to prevent them. In the context of pediatric care, this may involve anticipating problems that may result from childhood treatment when patients become adults and attempting to mitigate these problems. This may also require healthcare providers to delay irreversible or potentially difficult treatments until patients reach an age at which they are better able to participate in discussions regarding such treatments.

Justice

The principle encompassing fairness within biomedical ethics is justice.1 Justice implies that every patient should have equivalent access to medical care regardless of where they live, their background, or their financial circumstances. Consistency in allocating therapies is an important aspect of justice in medical care. Local laws may vary throughout a country compromising justice in the delivery of medical care. In areas where there are laws preventing the use of certain therapies in pediatrics, for example, pediatric patients may be legally unable to receive treatment that is available in other parts of the country. Thus, when local laws run contrary to the best possible provision of care, it may be incumbent on medical practitioners to advocate, lobby, or otherwise pursue a more just distribution of medical care.

It is especially important to employ the principle of justice in treating potentially vulnerable patients, such as the pediatric population. Younger pediatric patients may not understand the benefits and harms of medical therapies, and adolescent patients have not yet achieved the maturity to be fully autonomous. Additionally, preventing exploitation or coercion of vulnerable patients falls under the principle of justice. Thus, patients who are legally unable to make decisions themselves must be evaluated for evidence of such coercion. Thus, in providing medical care to a vulnerable population practitioners must consider the bioethical principle of justice, provide care in a fair and equal manner, and prevent coercion of patients.

Autonomy/Respect for Persons

Respect for persons, also called respect for autonomy, is the moral principle guarding an individual’s right to self-determination.1 The right to make one’s own health care decisions benefits individuals with capacity, allowing them to take control of their medical care. Adults with capacity are clearly able to understand the consequences of decisions that they make. However, in the adult population, capacity can be temporarily or permanently compromised by illnesses, ignorance or coercion. In contrast to adults, it is less clear in the pediatric population when a patient becomes able to fully comprehend medical decision making. As pediatric patients approach adulthood, they increasingly have opinions and desires for independent decision making. However, parents are typically involved in the unemancipated child’s decision making until they reach the legal age of majority (18 years in the USA). This means that healthcare professionals must navigate respect for the wishes of both the pediatric patient and their parents. When these wishes align, it is far easier to provide medical care than when they are at odds. Ethical dilemmas arise when pediatric patients have preferences that are contrary to their caregivers’ expectations.

Autonomy involves individuals acting with intention, able to understand their actions and without coercive influences. Responsibility for respect for persons can fall on the healthcare worker. This involves not only providing options and respecting individuals desires. Healthcare workers may be responsible for advocating for patients’ care or providing education to facilitate informed consent. In the case of the pediatric population health care workers may find themselves advocating for the best possible care for the patient, educating a patient and their caretakers or seeking legal authority when caretakers’ preferences conflict with what appears to be the child’s best interests.

Disorders of Sexual Differentiation

Management of the patient with DSD can be medically and surgically complex. But undoubtedly the aspect of care that is most ethically fraught is gender assignment in the setting of genital ambiguity.

For a neonate or infant, the first issue is to determine who the appropriate decision-maker should be. The law calls for an adult surrogate decision-maker. Historically, the parents have been regarded as the rightful parties based on a “best interests” standard which is believed to represent what reasonable persons would consider the highest net benefit among the available options.1 The law has assumed that parents generally do act in their child’s best interests and thus the state should be reluctant to interfere. It is also generally believed that only the parents can fully understand the values inherent to their family in assessing medical priorities.

There are two challenges to the principle of parents as rightful surrogate decision-makers for their child. The first is based on the qualifications for surrogate decision-making, of which there are four: 1) competency—the ability to make reasonable judgements; 2) emotional stability; 3) partiality toward the patient’s interests and 4) adequate knowledge and information. In the setting of decision-making for the infant with DSD the greatest challenge for most surrogates would be the 4th qualification—adequate understanding to make the best decision. This is not necessarily a function of intelligence or educational level of the parent but limitations in medical understanding of these conditions. This qualification places the burden on the treating physician team to provide thorough and understandable information so that the parents feel informed in their consent to treat.

The second challenge to parental surrogate decision-making relates to the limits of those decisions. One might argue that gender is so fundamental to the individual that allowing anyone other than the patient, themselves, to significantly influence that personal characteristic is inappropriate. This line of thought is consistent with preserving “an open future” for the adult whom the infant will become.

Assuming a scenario in which the parents feel well-informed and comfortable with the responsibility of surrogate medical decision-making for their child, one might consider the potential surgical decisions to be made. The most common DSD diagnosis that raises surgical questions is congenital adrenal hyperplasia (CAH) in the 46XX female, in which external genitalia are virilized prenatally due to supraphysiologic levels of Testosterone (T).3 This can result in clitoromegaly and formation of a urogenital sinus into which both vagina and urethra drain. Internally, the child is an anatomically normal female. The elevated T levels raise the possibility that brain hormonal imprinting may occur, although very rarely do these patients identify as male when the diagnosis is made in the neonatal period. So, the potential surgical issues facing the virilized female include exteriorization of the vagina, which is medically necessary in the long run for reproductive tract function and clitoral reduction which may be psychologically important but not necessarily medically essential. In addition, future fertility as a female has supported maintenance of female gender in the more virilized cases.

An important principle in the management of children with DSD’s, consistent with preservation of future options, is to avoid irreversible surgical procedures.4 For the child with CAH, exteriorization of the vagina is a reversible procedure in the sense that vaginectomy could be performed should that child identify as male later in life. Clitoral reduction, on the other hand, would represent an irreversible procedure as it entails removal of hypertrophic erectile tissue which cannot currently be replaced. Of these two procedures, vaginoplasty is certainly the more time sensitive, as it can be performed with considerably less morbidity and greater safety in the young child, aged 6 to 18 months. Clitoral reduction can be performed safely in pubertal females at an age of meaningful assent and established gender identity, thereby protecting the autonomous decision-making of the patient, themselves.

The dilemma confronting parents of a child with CAH (or another DSD) and genital ambiguity is determining for themselves what represents the best interests of their child. Postponement of a decision regarding surgery entails selection of a pathway that will have its own implications for the child’s development. Little data exists about the effects of external genital ambiguity on the psychological development of the child. Therefore, those who might argue in favor of a surgical moratorium for these disorders (as has occurred in Europe) have acted with missing information about its consequences. In the absence of greater medical certainty, deference to the decisions of the parental surrogate decision-makers seems respectful and reasonable.5

Care for the Gender Non-Conforming Population

The pediatric transgender and gender nonconforming population represents a group in which there are several ethical conundrums for medical providers. In the adult population with gender dysphoria, it is usually clear that the patient, themselves, should be making choices related to gender affirming therapies. However, in the pediatric population, it may be less clear whether patients fully understand decisions, requiring consideration for respect for persons.1 Additionally, it is important to work with parents and caregivers to maximize care and minimize harm thereby embodying the principles of beneficence and non-maleficence.1 Finally, attempting to provide optimal gender affirming care for all gender dysphoric individuals regardless of age embodies the principle of justice.1

Parental Involvement

Care in the pediatric population is typically overseen by a parent or guardian who has influence over the decisions made by the pediatric patient or makes decisions on their behalf. The bioethical construct of respect for persons is therefore relevant as healthcare providers attempt to deliver gender affirming care for minor patients. Because lack of gender affirming care can have such a negative psychological impact, it is imperative to work with patients and their caregivers to deliver treatment.6 Parents typically make decisions with their child’s best interest in mind but sometimes, especially in emotionally charged situations, parental decision-making can be compromised.7 In situations in which the minor and parents are at odds, there is precedent for facilitating care of the minor when they may experience significant distress at not receiving such care,6,8

Parental involvement is important in the care of the pediatric or adolescent transgender patient and is associated with improved physical and mental health outcomes in this population.9 Thus, a key role for medical professionals in providing transgender care is encouraging parental support of pediatric transgender patients. Interestingly, one study demonstrated that transgender children and adolescents rated the support they received from their parents higher than the parents rated their ability to provide that support.9,10 This finding may indicate that parents are able to fulfill a supportive role for their children despite discomfort with the transition process. It is thus important for medical practitioners to evaluate caregiver attitudes and promote supportive behaviors in this population.

One study evaluated parents’ and caregivers’ reactions to what the authors termed “pivotal moments” in the development of their child’s gender identity.9,10 These events included learning of a patient’s gender identity, the child’s desire for a name or pronoun change, hearing descriptions of their child’s gender dysphoria and hearing their child express interest in topics related to gender identity.9,10 Many parents reported requiring time to adjust to these changes with an initial negative reaction followed by acceptance. These “pivotal moments” correspond with topics that may be discussed as part of a transgender child’s medical appointments and thus it is incumbent on medical providers to facilitate communication between patients and their caregivers and to promote caregiver acceptance.10

Transition to Adult Care

An interesting aspect of the pediatric population is that they are initially managed by pediatric specialists but will, presumably in their late teens or early twenties, transition to care by adult practitioners. The need for transition to adult care uniquely impacts the principle of beneficence because there is a need to balance provision of high-quality care between pediatric and adult specialists. Patients come to trust their pediatric practitioners and surgeons and may struggle with the transition to adult care. A team-based approach including input from providers and surgeons who care for adults may improve this transition.

Surgical Considerations

Transgender individuals may consider gender affirming surgeries while they are minors. The availability of gender affirming surgery for minors falls into the ethical principles of justice and respect for persons. While pediatric patients are generally considered unable to make such decisions, the timing at which adolescents can adequately understand the permanence of surgical interventions remains hotly debated. The most just condition would permit such options to be available to transgender and gender non-conforming patients as soon as they achieve the maturity to fully understand the implications of their decisions. This availability would also maximize respect for persons. However, it is unclear exactly at what age individuals achieve the required maturity and it likely varies from person to person. One California-based study, conducted to evaluate referral patterns for gender affirming services between 2015 and 2018, included 104 instances of gender affirming surgeries in minors, which were typically performed between the ages of 14 and 18.11 A majority of these surgeries were gender affirming mastectomies but there were instances of hysterectomy, vaginoplasty and phalloplasty/metoidioplasty among this population.11 Advantages of surgical management in minors include patients completing physical transition with parental support and prior to leaving home for college or work. However, given the permanence of such surgeries, which typically entail sterilization, many practitioners defer surgical management until after the age of majority.8 A focus on maximizing future options provides useful guidance. In many cases, simply blocking puberty until a person reaches adulthood leaves surgical options open while allowing a person to socially transition and prevents unwanted secondary sexual changes to their body associated with their sex of birth.

Fertility

Gender affirming so-called “bottom” surgeries, typically entail gonadectomy and are therefore sterilizing procedures. Considerations of future fertility involve the principle of beneficence and non-maleficence. Thus, assessing attitudes of transgender individuals toward future fertility is important in providing proper care. In one survey administered to adolescent transgender and nonbinary individuals, about 16% expressed a desire for future biological children.12 However, some individuals express gender dysphoria associated with fertility preserving procedures, such as a visit to a sperm bank.12 Thus, the balance between beneficence and non-maleficence may be challenging. On the one hand, some transgender youths desire future biological children and may wish to preserve this option. On the other hand, fertility preservation may induce feelings of gender dysphoria. Shared decision making is paramount in carefully presenting options when discussing fertility in this population. Furthermore, deferring sterilizing therapies until after fertility decisions have been made remains prudent.

Laws have the potential to both positively and negatively impact justice for transgender and gender non-conforming individuals. Laws limiting gender-affirming therapies, even when recommended or overseen by health practitioners, will reduce options for gender non-conforming individuals, especially when they are written in such a way as to prevent even temporary therapies. Additionally, discriminatory laws that are enacted locally may reduce availability of such therapies, which is also unjust. On the other hand, laws aimed at punishing discrimination or bullying may positively impact patients.

As of 2021, 22 states had introduced legislation limiting gender-affirming medical care in the pediatric population and 1 state, Arkansas, had passed such legislation.13,14 Some of the introduced laws block gender-affirming therapy even with parental permission.13 Medical practitioners have criticized this type of legislation, noting that it politicizes medical care and legally mandates care that is a departure from accepted practice standards.13 Furthermore, practitioners have noted that these laws adversely impact patients’ mental health and reduce these patients’ access to healthcare.13 These laws may reduce or eliminate insurance coverage for patients desiring gender transition.14

Laws regulating treatment of gender diverse individuals also dissuade providers due to fear of legal consequences for provision of care.13 Laws, such as Arkansas HB1570, allow for legal action against medical practitioners who prescribe gender affirming therapies to be brought by a patient’s parents throughout childhood and by the patient themselves for 20 years into adulthood.14 Laws of this type may dissuade practitioners from treating gender diverse individuals or impact their specialty choice.13 Additionally, it is likely that individuals interested in practicing gender affirming medicine will preferentially locate in states that do not have such laws. The principle of justice requires availability of practitioners so that care is readily available to gender dysphoric individuals that require it. Thus, laws such as this adversely impact just medical care.

Conclusions

The principles of bioethics have a significant impact on the delivery of pediatric surgical care. When attempting to provide just care with respect for patient autonomy, the pediatric population is particularly vulnerable due to their legal status as minors and actual or perceived mental and emotional immaturity. These challenges in providing ethical pediatric care are highlighted by the DSD and gender non-conforming patient populations. Balancing patient preferences and parental expectations may contribute to ethical dilemmas for the pediatric medical provider. Additionally, ethical care provision may be further complicated by local laws. A focus on non-permanent options prior to the age of majority, shared decision making and a team-based approach when transitioning to adult care can alleviate ethical difficulties relating to care in these populations.

Suggested Readings

  • Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 6th ed., New York, NY: Oxford University Press; 2009, DOI: 10.1016/s0001-2092(07)68177-0.
  • Diamond DA, Swartz J, Tishelman A, Johnson J, Chan YM. Management of pediatric patients with DSD and ambiguous genitalia: Balancing the child’s moral claims to self-determination with parental values and preferences. J Pediatr Urol 2018; 14 (416): 1–5. DOI: 10.1016/j.jpurol.2018.04.029.
  • Hale AE, Chertow SY, Weng Y, Tabuenca A, Aye T. Perceptions of Support Among Transgender and Gender-Expansive Adolescents and Their Parents. J Adolesc Health 2021; 68: 1075–1081. DOI: 10.1016/j.jadohealth.2020.11.021.
  • Hughes LD, Kidd KM, Gamarel KE, Operario D, Dowshen N. These Laws Will Be Devastating”: Provider Perspectives on Legislation Banning Gender-Affirming Care for Transgender Adolescents. J Adolesc Health 2021; 69 (6): 976–982. DOI: 10.1016/j.jadohealth.2021.08.020.
  • Kerman HM, Pham A, Crouch JM. Gender Diverse Youth on Fertility and Future Family: A Qualitative Analysis. J Adolesc Health 2021; 68 (6): 1112–1120. DOI: 10.1016/j.jadohealth.2021.01.002.

References

  1. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 6th ed., New York, NY: Oxford University Press; 2009, DOI: 10.1016/s0001-2092(07)68177-0.
  2. Lo B. Resolving ethical dilemmas: A guide for clinicians. 3rd ed., Philadelphia, PA: Lippincott Williams & Wilkins; 2005.
  3. Yu RN, Diamond DA. Disorders of sexual development: Etiology, evaluation, and medical management. Philadelphia, PA: Elsevier; 2021.
  4. Diamond DA, Swartz J, Tishelman A, Johnson J, Chan YM. Management of pediatric patients with DSD and ambiguous genitalia: Balancing the child’s moral claims to self-determination with parental values and preferences. J Pediatr Urol 2018; 14 (416): 1–5. DOI: 10.1016/j.jpurol.2018.04.029.
  5. Abram MB, Ballantine HT, Dunlop GR. Making health care decisions: The ethical and legal implications of informed consent in the patient-practitioner relationship. Washington, D. C: U.S. Government Printing Office; 1982, DOI: 10.2307/1288680.
  6. Chen D, Edwards-Leeper L, Stancin T, Tishelman A. Advancing the Practice of Pediatric Psychology with Transgender Youth: State of the Science, Ongoing Controversies, and Future Directions. Clin Pract Pediatr Psychol 2018; 6: 73–83. DOI: 10.1037/cpp0000229.
  7. Campbell A, Gillett G, Jones J. Medical ethics. 4th ed., South Melbourne, Victoria: Oxford University Press; 2005, DOI: 10.3727/108399897791871490.
  8. Priest M. Transgender Children and the Right to Transition: Medical Ethics When Parents Mean Well but Cause Harm. Am J Bioeth 2019; 19: 45–59. DOI: 10.1080/15265161.2018.1557276.
  9. Hale AE, Chertow SY, Weng Y, Tabuenca A, Aye T. Perceptions of Support Among Transgender and Gender-Expansive Adolescents and Their Parents. J Adolesc Health 2021; 68: 1075–1081. DOI: 10.1016/j.jadohealth.2020.11.021.
  10. Mehringer JE, Ford CA. Clinicians’ Roles in Supporting Caregivers of Transgender and Gender-Expansive Youth. J Adolesc Health 2021; 68: 1031–1033. DOI: 10.1016/j.jadohealth.2021.03.006.
  11. Handler T, Hojilla JC, Varghese R, Wellenstein W, Satre DD, Zaritsky E. Trends in Referrals to a Pediatric Transgender Clinic. Pediatrics 2019; 144: e20191368. DOI: 10.1542/peds.2019-1368.
  12. Kerman HM, Pham A, Crouch JM. Gender Diverse Youth on Fertility and Future Family: A Qualitative Analysis. J Adolesc Health 2021; 68 (6): 1112–1120. DOI: 10.1016/j.jadohealth.2021.01.002.
  13. Hughes LD, Kidd KM, Gamarel KE, Operario D, Dowshen N. These Laws Will Be Devastating": Provider Perspectives on Legislation Banning Gender-Affirming Care for Transgender Adolescents. J Adolesc Health 2021; 69 (6): 976–982. DOI: 10.1016/j.jadohealth.2021.08.020.
  14. Lundstrum R, Barker SE, Bentley M. An act to create the Arkansas save adolescents from experimentation (SAFE) act; and for other purposes. Arkansas So.

Last updated: 2023-02-21 20:03