Issues in Comprehensive Pediatric Nursing, 2014; 37(1): 25–38 ß Informa Healthcare USA, Inc. ISSN: 0146-0862 print / 1521-043X online DOI: 10.3109/01460862.2013.855842
ETHICAL DECISION-MAKING IN THE DILEMMA OF THE INTERSEX INFANT
Breanna L. Lathrop, MSN, MPH, FNP-BC1,2, Teresa B. Cheney, MSN, FNP-C1, and Annette B. Hayman, MSN, FNP-BC, CCRN, CCM1,3 1
Department of Nursing, Georgia Southern University, Statesboro, Georgia, USA, 2Good Samaritan Health Center, Atlanta, Georgia, USA, and 3 St. Joseph’s Candler Health System, Savannah, GA, USA
Keywords: Ambiguous genitalia, Disorders of sex development, Ethical decision-making, Intersex, Surgical intervention
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The Making Ethical Decisions about Surgical Intervention (MEDSI) tool is designed to guide health care professionals, patients, and families faced with ethically charged decisions regarding surgical interventions for pediatric patients. MEDSI is built on the principles of beneficence, nonmaleficence, and patient autonomy and created to promote truth-telling, compassion, respect for patient cultural and religious preferences, and appropriate follow up in the clinical setting. Following an overview of the 8 steps that compose MEDSI, the tool is applied to the management of intersex infants. The birth of a child with a disorder of sexual development (DSD) and ambiguous genitalia presents an ethically challenging situation for the family and health care team. The use of the MEDSI model is demonstrated in a case study involving the decision of surgical intervention in the management of an intersex child.
INTRODUCTION The healthcare environment is wrought with ethical dilemmas as patients and families struggle to make choices with often incomplete Received 18 August 2013; revised 29 September 2013; accepted 1 October 2013
Correspondence: Breanna Lathrop, 947 Custer Ave, SE, Atlanta, GA 30316, USA. E-mail: [email protected]
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information and limited time. One such frequently encountered decision is that of whether to pursue surgical intervention. Many surgical procedures are straightforward. A patient arrives at the emergency department (ED) with severe abdominal pain and imaging confirms appendicitis. Within the hour informed consent is obtained and the patient is in surgery. However, other surgical cases are not so straightforward and in the case of pediatric patients such difficult decisions fall to surrogate decision-makers. Should the management of a child with ambiguous genitalia include immediate gender assignment with surgical reconstruction? Such decisions are ethically charged and the health care community must be prepared to guide families in making such decisions. The Making Ethical Decisions about Surgical Intervention (MEDSI) tool was designed to help health professionals, patients, and families decide whether or not to pursue surgical intervention (see Figure 1). The eight steps of the MEDSI tool will be outlined and application of this tool will be demonstrated in the ethical decision-making dilemma of infants born with ambiguous genitalia.
Figure 1. Application of MEDSI in Guiding Ethical Decision-Making.
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MAKING ETHICAL DECISIONS ABOUT SURGICAL INTERVENTION (MEDSI) The MEDSI tool is a 1-page ethical decision-making flowchart designed for use by health care professionals to guide families facing ethically charged decisions regarding surgical interventions. The tool contains up to eight steps aimed at promoting patient/family autonomy, beneficence, nonmaleficence, and informed consent. The tool is also designed to help identify medical emergencies, promote truth-telling in the health care environment, foster respect for the cultural and religious preferences of patients and their families, and encourage appropriate follow up management. While the tool is based on the application of general ethical principles, it was designed for use in the medical setting. To this extent, the MEDSI tool recognizes that ethical principles often conflict and patient prognosis and outcomes can change during the course of the decision-making. The steps guide patients, families, and medical teams through the decision-making process recognizing potential conflict. The purpose of this tool is to not only help such parties arrive at a decision, but also create a decision-making process that promotes respect and care for the patient and family. This tool is best applied in situations where the patient and family are choosing between surgical intervention and another medical intervention. The specific steps are explained within the context of decision-making in the case of infants born with ambiguous genitalia. DESCRIPTION AND APPLICATION OF THE MEDSI TOOL Description and History of the Ethical Dilemma Disorders of sex development (DSD) can encompass a wide range of external and internal conditions at birth. External conditions range from phallus in a female child, clitoral hypertrophy, truly ambiguous genitalia, a displacement of the urethral opening other than the tip of the penis in a male, or a total disharmony between the chromosomal sex and the anatomical sex of the infant (Gillam, 2010; Rangecroft, 2003; Reis & Kessler, 2010). Internal conditions range from possession of ovaries and testes to androgen insufficiency syndrome. Ambiguous genitalia occurs in 1.8 out of every 10,000 births (Dreger, 1998). The medical, surgical, and psychological management of these children present a unique ethical dilemma. According to Dreger (1998), the dilemma of sexual ambiguity at birth has existed for centuries. As early as the 1800s, physicians equated sexual identity for these infants with an educated guess about the
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presence or absence of gonadal tissue. It was not until the early 1900s that biopsies of gonads were performed and histological proof used as the basis for decision-making. However, physicians quickly realized that social issues continued to exist despite histological evidence of sexuality. As a result, there was a shift in intervention from defining sex based on gonads to surgical gender reconstruction in order to make the sexual anatomy more believable (Dreger, 1998). By the 1950s, the standard approach for the treatment of intersexuality was based on the psychosocial theory of gender identity (Dreger, 1998). Endorsed by organizations such as the American Academy of Pediatrics, this approach was driven by the concept that gender identity had to be established very early in life in order to insure the successful development of gender identity (Preves, 2002). It was felt that clarification of genital sex orientation was necessary at birth in order to alleviate social stigma and therefore, early guidelines for sex assignment and surgical intervention were established. As a result, surgical intervention was performed immediately after birth and the future of the newborn changed forever. In 2006, a new consensus statement was formulated based on emerging research (Hughes, Houk, Ahmed, Lee, & Lawson Wilkins Pediatric Endocrine Society/European Society Pediatric Endocrinology Consensus Group). The terminology of disorders of sex development (DSD) is now used to describe the atypical development of chromosomal, gonadal, or anatomical sex designation. In addition, the consensus statement outlines a new standard of care for individuals with DSD emphasizing gender assignment after expert evaluation, open communication, and the use of a multidisciplinary team (Hughes et al., 2006). The new goal in the medical management for these individuals is to provide intervention that facilitates the ability of the affected child to develop into a well-adjusted, psychologically stable individual who identifies with and is satisfied with the assigned sex (Go¨llu¨ et al., 2007). Over the past decade intersex individuals and medical providers have questioned the necessity, validity, and morality of surgical intervention. In the following discussion the authors review the ethical dilemma facing families of intersex children and the way in which the MEDSI tool can guide the decision-making process. Step 1: Define the Ethically Charged Decision to be Made and Assemble Relevant Players in the Decision-making Process Not all health care decisions represent ethical dilemmas. An ethical dilemma is characterized by the need to choose between two or more ‘‘morally acceptable courses of action’’ in which only one can be chosen
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(Association of Academic Health Centers, 2003). When guiding a patient through the decision-making process, the medical team must first clearly define the decision(s) that needs to be made by the patient and family. If multiple morally acceptable options exist, the decision-making process begins. Health care decisions represent some of the most important decisions an individual or family can make during a lifetime. It is critical that the appropriate individuals are present in the decisionmaking process. The principle of autonomy is paramount in biomedical ethics and is defined as self-determination (DeGrazia et al., 2011). The principle of autonomy dictates that to the extent possible, the patient should ultimately make decisions regarding his/her own care. In pediatric cases, it is often not possible for a child to realistically make surgical decisions. As a result, the medical team must identify the appropriate surrogate decision-makers including parents and legal guardians. In addition, a knowledgeable health care team should be assembled to provide the family with objective information and guidance regarding the child’s care. The immediate decisions facing the parents of an intersex child is that of defining the gender status for their newborn and deciding whether or not to pursue surgical intervention. Based on the 2006 consensus statement the decision-making team should include healthcare professionals specializing in disorders of sex development including nurses, mental health professionals, medical bioethicists, and pediatricians specializing in surgery, urology, endocrinology, and neonatology in addition to the parents/legal guardians (Woodward & Patwardhan, 2010). Chase (2003) recommends that the mental health counselor be the central member of the team. The health care team can provide the parents with a basic overview of what to expect over the first 24 to 48 hours of the infant’s life. The team also can offer reassurance to the family, keeping in mind that the primary ethical consideration in this decision-making process is the well-being of the child (Gillam et al., 2010). Open communication between the medical team and the family is essential in decisions of care for intersex infants. Step 2: Verbalize Emotions and Express Questions and Concerns Without Judgment The second step in the MEDSI model works toward creating a nonjudgmental environment where honest complete disclosure of information is discussed and is guided by beneficence and virtue ethics. Beneficence is a broad ethical term encompassing ‘‘all forms of action intended to benefit or promote the good of other persons’’ (Beauchamp, 2008). Beneficence is one of Rawl’s prima facie duties and
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is the duty to, when possible, make better the lives of others (DeGrazia et al., 2011). In the health care setting, patients often find themselves in vulnerable situations. The MEDSI model reminds health care providers to allow patients and families to experience and process these emotions. The virtuous health care provider allows families to express their feelings and concerns without judgment. Step 2 also acknowledges that health care providers themselves may have emotions, stereotypical beliefs, and insecurities that can interfere with the decision-making process. Acknowledging and confronting these personal obstacles helps to prevent emotions from clouding the decision-making process. In the case of an intersex infant, fear, shame, guilt, and hesitance to bond with the child, as well as acceptance of a child with a birth defect and inexperience with the situation can create an emotionally charged environment and impair decision-making. Respect for the newborn and family must be demonstrated by all members of the health care team and information discussed among the parents and team held in strict confidence. During this step, the health care team provides the family with the opportunity to discuss their feelings openly without judgment. Families may feel guilt and shame as a result of a deeply held worldview that a child must be male or female, not both or neither (Chase, 2003). The health care team should also admit their inexperience, concerns, and/or biases. Fausto-Sterling advises health care providers to frankly admit to the parents the uncertainty of the ‘‘correct’’ course of action (Scannell, 2001). During this time, it is recommended that gender assignment and use of specific male and female pronouns be avoided in order to decrease parental anxiety. Step 3: Identify Issues of Medical Necessity and Emergency The first priority in any health care decision-making process is to avoid unnecessary harm to the patient. Ross summarizes the duty of nonmaleficence as not injuring others and describes this duty as particularly stringent (DeGrazia et al., 2011). The patient and family need to be aware if delaying surgery could result in death or irreversible harm. The medical team should offer a guideline as to the timeframe of the decision-making process if applicable. The medical team should allow patients and families time to work through the decision-making process to the extent that a medical emergency is not present. The intersex newborn needs to be evaluated emergently for congenital adrenal hyperplasia which occurs in 60% of all DSD cases (Hutcheson, 2012). Severe urological impairment, such as bladder outlet obstruction, may also require immediate action. In these cases, surgical intervention may be required without proceeding with additional information
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gathering and discussion. In such cases, the family should be informed immediately of these concerns and the decision-making process regarding follow-up care should be continued following the needed intervention. Step 4: Gather Information Pertinent to the Case When no medical emergency exists, the decision-making team proceeds to gather information to further guide the decision-making process. This may include additional testing such as laboratory tests or imaging. It might also include consultation with specialists, mental health counselors, or patient advocacy groups. In order to make an informed choice about surgery, patients and families must have complete, accurate, and understandable information. Informed consent has become a moral and legal right for patients across the globe. The World Medical Association (WMA) Declaration of the Rights of the Patient (2005) states, ‘‘The patient has the right to information necessary to make his/her decisions’’ (3.b). The WMA (2009) further elaborates on consent in the Medical Ethics Manual, detailing that providers must explain all tests and procedures in a way that is understandable to the patient or, in the case of minor children, substitute decision-makers. During step 4, all relevant medical information is explained to the family of the intersex child, allowing parents to exercise autonomy in their decision-making process. Clinical examination and diagnostic testing can provide important information for parents of DSD infants. Diagnostic evaluation should include karyotyping with X and Y-specific probe detection which is the most common biological determinant on which gender assignments are based (Woodward & Patwardhan, 2010). Diagnostic evaluation also includes ultrasound of the abdomen and pelvis, and measurement of 17-hydroxyprogesterone, testosterone, gonadotropins, anti-Mullerian hormone, serum electrolytes, and urinalysis (Woodward & Patwardhan, 2010). Secondary evaluations may need to include hCG, ACTH stimulation tests, urinary steroid analysis by GC mass spectroscopy, and biopsies of gonadal material (Hughes et al., 2006). These test results can help the health care team and the parents with surgical decisions as well as gender assignment. Step 4 also acknowledges that objective data and medical statistics often fall short of providing patients with all the information they need to make an informed decision. Health care decisions have psychological and emotional impacts, complicating the decision-making process. Mental health specialists, counselors, and outside resources should be consulted at this point in the decision making process. Parents
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considering a procedure for their child may benefit from conversations with other families who have faced this decision or relevant support groups. This step also was designed to promote truth telling in the clinical setting. Patients should have access to evidence-based and accurate information. While such information might be distressing to the family, the withholding of such information can be even more devastating. This point is clearly illustrated in the example of intersex infants. Historically, parents of intersex infants were advised to consent to immediate gender assignment surgery despite the fact that no comprehensive study has yet to demonstrate a therapeutic benefit from surgery (Scannell, 2001). Parents were then advised to maintain the secrecy of the child’s gender ambiguity. However, it is now felt that secrecy may be the most harmful aspect if included in the treatment of intersex conditions (Beh & Diamond, 2000). Step 5: Identify Legal Issues Pertinent to the Case Medical practice is governed by legal statutes and precedence ranging from patient privacy to malpractice. The medical team should have a clear understanding of legal statutes pertinent to the case and the standard of care related to the patient’s condition. Frequently in the medical field, the law has allowed the healthcare profession to establish its own standard of care (Beh & Diamond, 2000). Patients and families should be informed of the standard of care for their condition and whether or not this standard includes multiple treatment options. If a patient refuses the standard of care, the medical team must ensure that the patient or surrogate decision-makers understand the risks of such a decision. The principle of autonomy dictates that patients be allowed to make health care decisions even if such decisions result in harm or death. This practice becomes complicated in cases, such as with children or incompetent adults, when surrogate decision-makers are responsible for decision-making. In such cases the medical team may have the legal or ethical precedence to counter the surrogate’s decision if their decision has the potential to cause serious harm or death to the patient and safer options exist. In the case of intersex infants, parents should be informed of their rights as the child’s surrogate decision-makers. The medical team can also help families understand any legal statutes influencing the decisionmaking process. For example, neonatal gender assignment may be a legal or social requirement (Beh & Diamond, 2000; Chase, 2003). In the United States, states have laws requiring gender assignment for the completion of the birth certificate. Australia and Columbia have laws
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that take the decision making out of the hands of the parents and the health care team, and place the decision with the courts of law (Gillam et al., 2010). It is essential that the health care team help parents understand that surgical intervention is not a prerequisite for gender assignment and remain honest about the complexity of ambiguous genitalia and the discordant standards among health professionals (Rangecroft, 2003; Scannell, 2001). Step 6: Analyze Information and Discuss Patient/family Preferences Once the patient, family, and medical team have obtained test results, consultations, and expert opinions, the information is analyzed and discussed. During this time the patient or, in the case of young children, the family, should have the opportunity to ask questions of the medical team and express their preferences. Beneficence and respect for patient autonomy require prioritization of the patient’s and family’s treatment preferences. Such preferences are heavily influenced by cultural and religious views. The ethical decision-making process is based in normative ethics, the study of what is right and wrong (Summers, 2009). Normative ethics seeks to determine the moral views or rules which are most appropriate in a decision-making situation (Summers, 2009). The appropriateness of moral rules and principles is influenced by culture and religion. The medical team must take care to acknowledge the way in which such beliefs influence the thinking of patients and families. Providers also should be conscious of the way their cultural norms and beliefs may bias their medical opinions. Respect and understanding toward the beliefs and preferences of patients and their families allows for honest communication and the promotion of patient dignity and autonomy. In the case of intersex infants, parents should have the opportunity to discuss surgical and non-surgical interventions with the medical team, considering the consequences of each option. The role of the medical team is to provide honest answers based on the information available. In such an emotionally charged decision-making process, it is imperative that the best interest of the child remains the top priority for both the medical team and family (Chase, 2003). Step 7: Decision A commitment to a decision is made by selecting the alternative that produces the most desirable result for the patient based on all the information available. The decision is ultimately made by the patient or surrogate decision-makers. The focus for the medical team shifts to
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strategies for implementation of the decision as well as avenues for ongoing re-evaluation. It would also be appropriate at this time to perform a debriefing among members of the multidisciplinary team in order to self-evaluate successes and failures as well as improve the ethical decision-making framework. The decision regarding gender assignment and surgical options is influenced by a range of factors including diagnosis, genital appearance, genotype, surgical options, need for life-long replacement therapy, the potential for fertility, views of the family, and cultural practice (Go¨llu¨ et al., 2007; Hughes et al., 2006). The MEDSI model is designed to help families and medical teams consider each of these factors. Management of an intersex infant is particularly challenging in that life-changing decisions must be made on the infant’s behalf. Since parents have the moral claim of decision-making for their infant by virtue of their parental role, Gillam et al. (2010) advocate that the parents’ gender preference for their child be considered. The role of the medical team is to provide parents with the appropriate information and resources to make the decision that is in the best interest of the child (Hedley, 2006). When appropriate, the medical team may make specific recommendations. For example, Gillam et al. (2010) advise that the medical team’s long-range plan leaves options open for the future for the infant with DSD. This includes such decisions as delaying surgery until the child can grow to a mature enough level to have input into the decision, and avoiding the removal of gonadal tissue. They further recommend that if the decision is made for surgical intervention that the genital area be left in such a state that the child can change sexes in the future if he/she desires. Preservation of the capacity to have satisfying sexual relations should also be considered (Gillam et al., 2010; Preves, 2002). While the medical team can discuss this with parents, parents may choose a more extensive surgical option based on family views, religious beliefs, cultural values, or other factors. The medical team may need to take a more active role in the decision-making process if the parents’ preference has the unnecessary potential for serious physical harm or death to the child. Step 8: Arrange and Provide Appropriate Follow-up The MEDSI tool reminds the decision-making team that the decision does not mark the end of the ethical dilemma. Once a decision has been made, both predicted and unintended consequences will arise. The benevolent medical team will provide the patient and family with the appropriate follow-up care. This may include surgical follow-up,
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medical management, counseling, and support group referrals. For parents of intersex infants, this might include family counseling, ongoing medical evaluation, and support for their decision. Beh & Diamond (2000), along with Sytsma (2006), reason that individual and family counseling is a nonsurgical approach that preserves a child’s right to self-determination and encourages positive coping strategies. Regardless of the decision made, families require ongoing support and evaluation by compassionate and knowledgeable health care providers. The MEDSI tool is designed to be a useable resource for health care professionals, families, and patients making choices about surgical interventions. It is the authors’ hope that this tool may promote beneficence, autonomy, informed consent, and truth telling in the midst of complex and ethically charged health care dilemmas. The following case study briefly illustrates the use of the MEDSI tool in the clinical setting. CASE STUDY In this fictional case study, Caryn and Dave, 28 and 29 years old respectively, have just delivered their first child. The infant has a very small penis where the clitoris on a female should be located, vulvae directly below the penis, and what appear to be small testicles at the lower portion of the vulvae. The obstetrician allows Caryn to hold her baby while he contacts the pediatrician. The obstetrician and pediatrician explain to David and Caryn the testing that needs to be performed immediately on their child to rule out any medical emergency. During this time a mental health counselor and pediatric urology nurse specializing in DSD management speak with David and Caryn, allowing them the opportunity to express their feelings and concerns. Dave admits that he has always wanted a boy and feels unable to bond with his child without knowing a gender. Caryn is worried about what this will mean for their child’s future. Within hours, a medical team is formally established and initial testing has ruled out emergent issues including congenital adrenal hyperplasia, hypopituitarianism, and hypospadias. The team informs Caryn and Dave that, as the newborn’s parents, that they will be responsible for making the final decision regarding gender assignment for their child and whether or not to undergo surgical reconstruction at this time. The team also describes the additional testing recommended to facilitate the decision-making process. Caryn and Dave consent to testing, requesting that their child remain with them as much as possible. Testing is completed over the next 48 hours.
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During this time, Caryn and Dave meet with a counselor who has worked with families of DSD infants, and also a couple who leads a local support group for parents in similar situations. The entire medical team meets with Caryn and Dave to review the results. Karyotyping has indicated the child is male and early testing indicates a response to testosterone therapy. The team explains to Caryn and Dave that surgical intervention is not a prerequisite for gender assignment and remains honest about the complexity of ambiguous genitalia and the discordant standards among health professionals. They also discuss prioritization of the health, potential fertility, and autonomy of the child for the future. Caryn and Dave decide to bring their child home assigned as a male and delay surgery at this time. Upon discharge the medical team schedules follow-up appointments with a family counselor and pediatric urologist and endocrinologist. Caryn and Dave also plan to attend the support group lead by the couple they have met. PRACTICE IMPLICATIONS Parents of children born with disorders of sex development face numerous ethically charged decisions immediately after delivery. It is essential that parents be provided with honest and complete information regarding the medical condition, all potential treatment options and their consequences. Consideration of ethical, legal, cultural, and religious implications is also important. The MEDSI tool encourages caring and compassion with the goal of assisting families needing structured guidance to decipher ethical dilemmas related to disorders of sex development, and therefore assist in making informed decisions for their children. As a framework for intervention, the MEDSI tool works to minimize the trauma of having a child born with a birth defect and facilitates ethical decision-making that results in the development of a well-adjusted, psychologically stable individual who identifies and is satisfied with gender assignment. The MEDSI tool may also be beneficial to families and health care teams facing surgical decisions under other circumstances. The tool can be used to encourage thoughtful consideration of ethical principles in complex decision-making processes, maximizing patient respect and autonomy. DECLARATION OF INTEREST The authors report no conflict of interest. The authors alone are responsible for the content and writing of the paper.
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REFERENCES Association of Academic Health Centers. (2003). A framework for resolving ethical dilemmas in health care. Retrieved from http://learn.gwumc.edu/hscidist/ LearningObjects/EthicalDecisionMaking /index.htm (Last accessed August 16, 2013). Beauchamp T. (2008). The principles of beneficence in applied ethics. In E.N. Zalta (Ed.), Stanford encyclopedia of philosophy (2008). Retrieved from http:// plato.stanford.edu/entries/principle-beneficence/ (Last accessed August 16, 2013). Beh HG, Diamond M. (2000). An emerging ethical and medical dilemma: Should physicians perform sex assignment on infants with ambiguous genitalia? Mich J Gender and Law, 7, 1–63. Chase C. (2003). What is the agenda of the intersex patient advocacy movement? Endocrinologist, 13, 240–242. Dreger AD. (1998). Ambiguous sex of ambivalent medicine? Hastings Center Report, 28, 24–35. DeGrazia D, Mappes TA, Brand-Ballard J. (2011). Biomedical ethics (7th ed.). New York, NY: McGraw Hill., pp. 1–57, 172–175. Gillam LH, Hewitt JK, Warne GL. (2010). Ethical principles for the management of infants with disorders of sex development. Hormone Research in Paediatrics, 74, 412–418. doi: 10.1159/000316940. Go¨llu¨ G, Yıldız RV, Bingol-Kologlu M, et al. (2007). Ambiguous genitalia: An overview of 17 years’ experience. J Pediatric Surgery, 42, 840–844. doi.:10.1016/ j.jpedsurg.2006.12.036. Hedley LA. (2006). The seduction of a surgical fix. In: DeGrazia D, Mappes TA, BrandBallard J (Eds.), Biomedical ethics (7th ed.) (pp. 172–5). New York, NY: McGraw Hill. Hughes, I.A., Houk, C., Ahmed, S.F, Lee, P.A., & Lawson Wilkins Pediatric Endocrine Society/European Society Pediatric Endocrinology Consensus Group. (2006). Consensus statement on management of intersex disorder.Journal of Pediatric Urology, 2(3), 148–162. doi: 10.1016/j.jpurol.2006.03.004. Hutcheson, J. (2012). Ambiguous genitalia and intersexuality clinical presentation. Medscape reference: Drugs, diseases, and procedures. Retrieved from http:// emedicine.medscape.com/article/1015520-overview (Last accessed August 16, 2013). Preves SE. (2002). Sexing the intersexed: An analysis of sociocultural responses to intersexuality. Signs, 27, 523–556. Rangecroft, L. (2003). Surgical management of ambiguous genitalia. Arch Dis Child, 88, 799–801. doi: 10.1136/adc.88.9.799. Reis, E, Kessler S. (2010). Why history matters: Fetal sex and intersex. Am J Bioethics, 10, 58–59. Scannell, K. (2001). Engendering differences: Ethical issues about intersex. The Permanente Journal, 5(4), 1-5. Retrieved from http://xnet.kp.org/permanentejournal/ Fall01/ethics.html (Last accessed August 16, 2013). Summers J. (2009). Principles of health care ethics. In: Morrison E (Ed.), Health care ethics: critical issues for the 21st century (2nd ed). Sudbury, MA: Jones and Bartlett.
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Sytsma S.E. (2006). Introduction. In S.E. Sytsma (Ed.) Ethics and intersex. The Netherlands: Springer. Woodward, M., & Patwardhan, N. (2010). Disorders of sex development. Paediatric Surgery, 28(8), 396–401. doi: 10.1016/j.mpsur.2010.04.007. World Medical Association. (2005). The declaration of Libson on the rights of the patient. Retrieved from http://www.wma.net/en/30publications/10policies/l4/ (Last accessed September 28, 2013). World Medical Association. (2009). Medical ethics manual. 2nd ed. Retrieved from http://www.wma.net/en/30publications/30ethicsmanual/pdf/ethics_manual_en.pdf (Last accessed September 28, 2013).
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ETHICAL DECISION-MAKING IN THE DILEMMA OF THE INTERSEX INFANT
Breanna L. Lathrop, MSN, MPH, FNP-BC1,2, Teresa B. Cheney, MSN, FNP-C1, and Annette B. Hayman, MSN, FNP-BC, CCRN, CCM1,3 1
Department of Nursing, Georgia Southern University, Statesboro, Georgia, USA, 2Good Samaritan Health Center, Atlanta, Georgia, USA, and 3 St. Joseph’s Candler Health System, Savannah, GA, USA
Keywords: Ambiguous genitalia, Disorders of sex development, Ethical decision-making, Intersex, Surgical intervention
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The Making Ethical Decisions about Surgical Intervention (MEDSI) tool is designed to guide health care professionals, patients, and families faced with ethically charged decisions regarding surgical interventions for pediatric patients. MEDSI is built on the principles of beneficence, nonmaleficence, and patient autonomy and created to promote truth-telling, compassion, respect for patient cultural and religious preferences, and appropriate follow up in the clinical setting. Following an overview of the 8 steps that compose MEDSI, the tool is applied to the management of intersex infants. The birth of a child with a disorder of sexual development (DSD) and ambiguous genitalia presents an ethically challenging situation for the family and health care team. The use of the MEDSI model is demonstrated in a case study involving the decision of surgical intervention in the management of an intersex child.
INTRODUCTION The healthcare environment is wrought with ethical dilemmas as patients and families struggle to make choices with often incomplete Received 18 August 2013; revised 29 September 2013; accepted 1 October 2013
Correspondence: Breanna Lathrop, 947 Custer Ave, SE, Atlanta, GA 30316, USA. E-mail: [email protected]
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information and limited time. One such frequently encountered decision is that of whether to pursue surgical intervention. Many surgical procedures are straightforward. A patient arrives at the emergency department (ED) with severe abdominal pain and imaging confirms appendicitis. Within the hour informed consent is obtained and the patient is in surgery. However, other surgical cases are not so straightforward and in the case of pediatric patients such difficult decisions fall to surrogate decision-makers. Should the management of a child with ambiguous genitalia include immediate gender assignment with surgical reconstruction? Such decisions are ethically charged and the health care community must be prepared to guide families in making such decisions. The Making Ethical Decisions about Surgical Intervention (MEDSI) tool was designed to help health professionals, patients, and families decide whether or not to pursue surgical intervention (see Figure 1). The eight steps of the MEDSI tool will be outlined and application of this tool will be demonstrated in the ethical decision-making dilemma of infants born with ambiguous genitalia.
Figure 1. Application of MEDSI in Guiding Ethical Decision-Making.
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MAKING ETHICAL DECISIONS ABOUT SURGICAL INTERVENTION (MEDSI) The MEDSI tool is a 1-page ethical decision-making flowchart designed for use by health care professionals to guide families facing ethically charged decisions regarding surgical interventions. The tool contains up to eight steps aimed at promoting patient/family autonomy, beneficence, nonmaleficence, and informed consent. The tool is also designed to help identify medical emergencies, promote truth-telling in the health care environment, foster respect for the cultural and religious preferences of patients and their families, and encourage appropriate follow up management. While the tool is based on the application of general ethical principles, it was designed for use in the medical setting. To this extent, the MEDSI tool recognizes that ethical principles often conflict and patient prognosis and outcomes can change during the course of the decision-making. The steps guide patients, families, and medical teams through the decision-making process recognizing potential conflict. The purpose of this tool is to not only help such parties arrive at a decision, but also create a decision-making process that promotes respect and care for the patient and family. This tool is best applied in situations where the patient and family are choosing between surgical intervention and another medical intervention. The specific steps are explained within the context of decision-making in the case of infants born with ambiguous genitalia. DESCRIPTION AND APPLICATION OF THE MEDSI TOOL Description and History of the Ethical Dilemma Disorders of sex development (DSD) can encompass a wide range of external and internal conditions at birth. External conditions range from phallus in a female child, clitoral hypertrophy, truly ambiguous genitalia, a displacement of the urethral opening other than the tip of the penis in a male, or a total disharmony between the chromosomal sex and the anatomical sex of the infant (Gillam, 2010; Rangecroft, 2003; Reis & Kessler, 2010). Internal conditions range from possession of ovaries and testes to androgen insufficiency syndrome. Ambiguous genitalia occurs in 1.8 out of every 10,000 births (Dreger, 1998). The medical, surgical, and psychological management of these children present a unique ethical dilemma. According to Dreger (1998), the dilemma of sexual ambiguity at birth has existed for centuries. As early as the 1800s, physicians equated sexual identity for these infants with an educated guess about the
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presence or absence of gonadal tissue. It was not until the early 1900s that biopsies of gonads were performed and histological proof used as the basis for decision-making. However, physicians quickly realized that social issues continued to exist despite histological evidence of sexuality. As a result, there was a shift in intervention from defining sex based on gonads to surgical gender reconstruction in order to make the sexual anatomy more believable (Dreger, 1998). By the 1950s, the standard approach for the treatment of intersexuality was based on the psychosocial theory of gender identity (Dreger, 1998). Endorsed by organizations such as the American Academy of Pediatrics, this approach was driven by the concept that gender identity had to be established very early in life in order to insure the successful development of gender identity (Preves, 2002). It was felt that clarification of genital sex orientation was necessary at birth in order to alleviate social stigma and therefore, early guidelines for sex assignment and surgical intervention were established. As a result, surgical intervention was performed immediately after birth and the future of the newborn changed forever. In 2006, a new consensus statement was formulated based on emerging research (Hughes, Houk, Ahmed, Lee, & Lawson Wilkins Pediatric Endocrine Society/European Society Pediatric Endocrinology Consensus Group). The terminology of disorders of sex development (DSD) is now used to describe the atypical development of chromosomal, gonadal, or anatomical sex designation. In addition, the consensus statement outlines a new standard of care for individuals with DSD emphasizing gender assignment after expert evaluation, open communication, and the use of a multidisciplinary team (Hughes et al., 2006). The new goal in the medical management for these individuals is to provide intervention that facilitates the ability of the affected child to develop into a well-adjusted, psychologically stable individual who identifies with and is satisfied with the assigned sex (Go¨llu¨ et al., 2007). Over the past decade intersex individuals and medical providers have questioned the necessity, validity, and morality of surgical intervention. In the following discussion the authors review the ethical dilemma facing families of intersex children and the way in which the MEDSI tool can guide the decision-making process. Step 1: Define the Ethically Charged Decision to be Made and Assemble Relevant Players in the Decision-making Process Not all health care decisions represent ethical dilemmas. An ethical dilemma is characterized by the need to choose between two or more ‘‘morally acceptable courses of action’’ in which only one can be chosen
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(Association of Academic Health Centers, 2003). When guiding a patient through the decision-making process, the medical team must first clearly define the decision(s) that needs to be made by the patient and family. If multiple morally acceptable options exist, the decision-making process begins. Health care decisions represent some of the most important decisions an individual or family can make during a lifetime. It is critical that the appropriate individuals are present in the decisionmaking process. The principle of autonomy is paramount in biomedical ethics and is defined as self-determination (DeGrazia et al., 2011). The principle of autonomy dictates that to the extent possible, the patient should ultimately make decisions regarding his/her own care. In pediatric cases, it is often not possible for a child to realistically make surgical decisions. As a result, the medical team must identify the appropriate surrogate decision-makers including parents and legal guardians. In addition, a knowledgeable health care team should be assembled to provide the family with objective information and guidance regarding the child’s care. The immediate decisions facing the parents of an intersex child is that of defining the gender status for their newborn and deciding whether or not to pursue surgical intervention. Based on the 2006 consensus statement the decision-making team should include healthcare professionals specializing in disorders of sex development including nurses, mental health professionals, medical bioethicists, and pediatricians specializing in surgery, urology, endocrinology, and neonatology in addition to the parents/legal guardians (Woodward & Patwardhan, 2010). Chase (2003) recommends that the mental health counselor be the central member of the team. The health care team can provide the parents with a basic overview of what to expect over the first 24 to 48 hours of the infant’s life. The team also can offer reassurance to the family, keeping in mind that the primary ethical consideration in this decision-making process is the well-being of the child (Gillam et al., 2010). Open communication between the medical team and the family is essential in decisions of care for intersex infants. Step 2: Verbalize Emotions and Express Questions and Concerns Without Judgment The second step in the MEDSI model works toward creating a nonjudgmental environment where honest complete disclosure of information is discussed and is guided by beneficence and virtue ethics. Beneficence is a broad ethical term encompassing ‘‘all forms of action intended to benefit or promote the good of other persons’’ (Beauchamp, 2008). Beneficence is one of Rawl’s prima facie duties and
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is the duty to, when possible, make better the lives of others (DeGrazia et al., 2011). In the health care setting, patients often find themselves in vulnerable situations. The MEDSI model reminds health care providers to allow patients and families to experience and process these emotions. The virtuous health care provider allows families to express their feelings and concerns without judgment. Step 2 also acknowledges that health care providers themselves may have emotions, stereotypical beliefs, and insecurities that can interfere with the decision-making process. Acknowledging and confronting these personal obstacles helps to prevent emotions from clouding the decision-making process. In the case of an intersex infant, fear, shame, guilt, and hesitance to bond with the child, as well as acceptance of a child with a birth defect and inexperience with the situation can create an emotionally charged environment and impair decision-making. Respect for the newborn and family must be demonstrated by all members of the health care team and information discussed among the parents and team held in strict confidence. During this step, the health care team provides the family with the opportunity to discuss their feelings openly without judgment. Families may feel guilt and shame as a result of a deeply held worldview that a child must be male or female, not both or neither (Chase, 2003). The health care team should also admit their inexperience, concerns, and/or biases. Fausto-Sterling advises health care providers to frankly admit to the parents the uncertainty of the ‘‘correct’’ course of action (Scannell, 2001). During this time, it is recommended that gender assignment and use of specific male and female pronouns be avoided in order to decrease parental anxiety. Step 3: Identify Issues of Medical Necessity and Emergency The first priority in any health care decision-making process is to avoid unnecessary harm to the patient. Ross summarizes the duty of nonmaleficence as not injuring others and describes this duty as particularly stringent (DeGrazia et al., 2011). The patient and family need to be aware if delaying surgery could result in death or irreversible harm. The medical team should offer a guideline as to the timeframe of the decision-making process if applicable. The medical team should allow patients and families time to work through the decision-making process to the extent that a medical emergency is not present. The intersex newborn needs to be evaluated emergently for congenital adrenal hyperplasia which occurs in 60% of all DSD cases (Hutcheson, 2012). Severe urological impairment, such as bladder outlet obstruction, may also require immediate action. In these cases, surgical intervention may be required without proceeding with additional information
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gathering and discussion. In such cases, the family should be informed immediately of these concerns and the decision-making process regarding follow-up care should be continued following the needed intervention. Step 4: Gather Information Pertinent to the Case When no medical emergency exists, the decision-making team proceeds to gather information to further guide the decision-making process. This may include additional testing such as laboratory tests or imaging. It might also include consultation with specialists, mental health counselors, or patient advocacy groups. In order to make an informed choice about surgery, patients and families must have complete, accurate, and understandable information. Informed consent has become a moral and legal right for patients across the globe. The World Medical Association (WMA) Declaration of the Rights of the Patient (2005) states, ‘‘The patient has the right to information necessary to make his/her decisions’’ (3.b). The WMA (2009) further elaborates on consent in the Medical Ethics Manual, detailing that providers must explain all tests and procedures in a way that is understandable to the patient or, in the case of minor children, substitute decision-makers. During step 4, all relevant medical information is explained to the family of the intersex child, allowing parents to exercise autonomy in their decision-making process. Clinical examination and diagnostic testing can provide important information for parents of DSD infants. Diagnostic evaluation should include karyotyping with X and Y-specific probe detection which is the most common biological determinant on which gender assignments are based (Woodward & Patwardhan, 2010). Diagnostic evaluation also includes ultrasound of the abdomen and pelvis, and measurement of 17-hydroxyprogesterone, testosterone, gonadotropins, anti-Mullerian hormone, serum electrolytes, and urinalysis (Woodward & Patwardhan, 2010). Secondary evaluations may need to include hCG, ACTH stimulation tests, urinary steroid analysis by GC mass spectroscopy, and biopsies of gonadal material (Hughes et al., 2006). These test results can help the health care team and the parents with surgical decisions as well as gender assignment. Step 4 also acknowledges that objective data and medical statistics often fall short of providing patients with all the information they need to make an informed decision. Health care decisions have psychological and emotional impacts, complicating the decision-making process. Mental health specialists, counselors, and outside resources should be consulted at this point in the decision making process. Parents
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considering a procedure for their child may benefit from conversations with other families who have faced this decision or relevant support groups. This step also was designed to promote truth telling in the clinical setting. Patients should have access to evidence-based and accurate information. While such information might be distressing to the family, the withholding of such information can be even more devastating. This point is clearly illustrated in the example of intersex infants. Historically, parents of intersex infants were advised to consent to immediate gender assignment surgery despite the fact that no comprehensive study has yet to demonstrate a therapeutic benefit from surgery (Scannell, 2001). Parents were then advised to maintain the secrecy of the child’s gender ambiguity. However, it is now felt that secrecy may be the most harmful aspect if included in the treatment of intersex conditions (Beh & Diamond, 2000). Step 5: Identify Legal Issues Pertinent to the Case Medical practice is governed by legal statutes and precedence ranging from patient privacy to malpractice. The medical team should have a clear understanding of legal statutes pertinent to the case and the standard of care related to the patient’s condition. Frequently in the medical field, the law has allowed the healthcare profession to establish its own standard of care (Beh & Diamond, 2000). Patients and families should be informed of the standard of care for their condition and whether or not this standard includes multiple treatment options. If a patient refuses the standard of care, the medical team must ensure that the patient or surrogate decision-makers understand the risks of such a decision. The principle of autonomy dictates that patients be allowed to make health care decisions even if such decisions result in harm or death. This practice becomes complicated in cases, such as with children or incompetent adults, when surrogate decision-makers are responsible for decision-making. In such cases the medical team may have the legal or ethical precedence to counter the surrogate’s decision if their decision has the potential to cause serious harm or death to the patient and safer options exist. In the case of intersex infants, parents should be informed of their rights as the child’s surrogate decision-makers. The medical team can also help families understand any legal statutes influencing the decisionmaking process. For example, neonatal gender assignment may be a legal or social requirement (Beh & Diamond, 2000; Chase, 2003). In the United States, states have laws requiring gender assignment for the completion of the birth certificate. Australia and Columbia have laws
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that take the decision making out of the hands of the parents and the health care team, and place the decision with the courts of law (Gillam et al., 2010). It is essential that the health care team help parents understand that surgical intervention is not a prerequisite for gender assignment and remain honest about the complexity of ambiguous genitalia and the discordant standards among health professionals (Rangecroft, 2003; Scannell, 2001). Step 6: Analyze Information and Discuss Patient/family Preferences Once the patient, family, and medical team have obtained test results, consultations, and expert opinions, the information is analyzed and discussed. During this time the patient or, in the case of young children, the family, should have the opportunity to ask questions of the medical team and express their preferences. Beneficence and respect for patient autonomy require prioritization of the patient’s and family’s treatment preferences. Such preferences are heavily influenced by cultural and religious views. The ethical decision-making process is based in normative ethics, the study of what is right and wrong (Summers, 2009). Normative ethics seeks to determine the moral views or rules which are most appropriate in a decision-making situation (Summers, 2009). The appropriateness of moral rules and principles is influenced by culture and religion. The medical team must take care to acknowledge the way in which such beliefs influence the thinking of patients and families. Providers also should be conscious of the way their cultural norms and beliefs may bias their medical opinions. Respect and understanding toward the beliefs and preferences of patients and their families allows for honest communication and the promotion of patient dignity and autonomy. In the case of intersex infants, parents should have the opportunity to discuss surgical and non-surgical interventions with the medical team, considering the consequences of each option. The role of the medical team is to provide honest answers based on the information available. In such an emotionally charged decision-making process, it is imperative that the best interest of the child remains the top priority for both the medical team and family (Chase, 2003). Step 7: Decision A commitment to a decision is made by selecting the alternative that produces the most desirable result for the patient based on all the information available. The decision is ultimately made by the patient or surrogate decision-makers. The focus for the medical team shifts to
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strategies for implementation of the decision as well as avenues for ongoing re-evaluation. It would also be appropriate at this time to perform a debriefing among members of the multidisciplinary team in order to self-evaluate successes and failures as well as improve the ethical decision-making framework. The decision regarding gender assignment and surgical options is influenced by a range of factors including diagnosis, genital appearance, genotype, surgical options, need for life-long replacement therapy, the potential for fertility, views of the family, and cultural practice (Go¨llu¨ et al., 2007; Hughes et al., 2006). The MEDSI model is designed to help families and medical teams consider each of these factors. Management of an intersex infant is particularly challenging in that life-changing decisions must be made on the infant’s behalf. Since parents have the moral claim of decision-making for their infant by virtue of their parental role, Gillam et al. (2010) advocate that the parents’ gender preference for their child be considered. The role of the medical team is to provide parents with the appropriate information and resources to make the decision that is in the best interest of the child (Hedley, 2006). When appropriate, the medical team may make specific recommendations. For example, Gillam et al. (2010) advise that the medical team’s long-range plan leaves options open for the future for the infant with DSD. This includes such decisions as delaying surgery until the child can grow to a mature enough level to have input into the decision, and avoiding the removal of gonadal tissue. They further recommend that if the decision is made for surgical intervention that the genital area be left in such a state that the child can change sexes in the future if he/she desires. Preservation of the capacity to have satisfying sexual relations should also be considered (Gillam et al., 2010; Preves, 2002). While the medical team can discuss this with parents, parents may choose a more extensive surgical option based on family views, religious beliefs, cultural values, or other factors. The medical team may need to take a more active role in the decision-making process if the parents’ preference has the unnecessary potential for serious physical harm or death to the child. Step 8: Arrange and Provide Appropriate Follow-up The MEDSI tool reminds the decision-making team that the decision does not mark the end of the ethical dilemma. Once a decision has been made, both predicted and unintended consequences will arise. The benevolent medical team will provide the patient and family with the appropriate follow-up care. This may include surgical follow-up,
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medical management, counseling, and support group referrals. For parents of intersex infants, this might include family counseling, ongoing medical evaluation, and support for their decision. Beh & Diamond (2000), along with Sytsma (2006), reason that individual and family counseling is a nonsurgical approach that preserves a child’s right to self-determination and encourages positive coping strategies. Regardless of the decision made, families require ongoing support and evaluation by compassionate and knowledgeable health care providers. The MEDSI tool is designed to be a useable resource for health care professionals, families, and patients making choices about surgical interventions. It is the authors’ hope that this tool may promote beneficence, autonomy, informed consent, and truth telling in the midst of complex and ethically charged health care dilemmas. The following case study briefly illustrates the use of the MEDSI tool in the clinical setting. CASE STUDY In this fictional case study, Caryn and Dave, 28 and 29 years old respectively, have just delivered their first child. The infant has a very small penis where the clitoris on a female should be located, vulvae directly below the penis, and what appear to be small testicles at the lower portion of the vulvae. The obstetrician allows Caryn to hold her baby while he contacts the pediatrician. The obstetrician and pediatrician explain to David and Caryn the testing that needs to be performed immediately on their child to rule out any medical emergency. During this time a mental health counselor and pediatric urology nurse specializing in DSD management speak with David and Caryn, allowing them the opportunity to express their feelings and concerns. Dave admits that he has always wanted a boy and feels unable to bond with his child without knowing a gender. Caryn is worried about what this will mean for their child’s future. Within hours, a medical team is formally established and initial testing has ruled out emergent issues including congenital adrenal hyperplasia, hypopituitarianism, and hypospadias. The team informs Caryn and Dave that, as the newborn’s parents, that they will be responsible for making the final decision regarding gender assignment for their child and whether or not to undergo surgical reconstruction at this time. The team also describes the additional testing recommended to facilitate the decision-making process. Caryn and Dave consent to testing, requesting that their child remain with them as much as possible. Testing is completed over the next 48 hours.
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During this time, Caryn and Dave meet with a counselor who has worked with families of DSD infants, and also a couple who leads a local support group for parents in similar situations. The entire medical team meets with Caryn and Dave to review the results. Karyotyping has indicated the child is male and early testing indicates a response to testosterone therapy. The team explains to Caryn and Dave that surgical intervention is not a prerequisite for gender assignment and remains honest about the complexity of ambiguous genitalia and the discordant standards among health professionals. They also discuss prioritization of the health, potential fertility, and autonomy of the child for the future. Caryn and Dave decide to bring their child home assigned as a male and delay surgery at this time. Upon discharge the medical team schedules follow-up appointments with a family counselor and pediatric urologist and endocrinologist. Caryn and Dave also plan to attend the support group lead by the couple they have met. PRACTICE IMPLICATIONS Parents of children born with disorders of sex development face numerous ethically charged decisions immediately after delivery. It is essential that parents be provided with honest and complete information regarding the medical condition, all potential treatment options and their consequences. Consideration of ethical, legal, cultural, and religious implications is also important. The MEDSI tool encourages caring and compassion with the goal of assisting families needing structured guidance to decipher ethical dilemmas related to disorders of sex development, and therefore assist in making informed decisions for their children. As a framework for intervention, the MEDSI tool works to minimize the trauma of having a child born with a birth defect and facilitates ethical decision-making that results in the development of a well-adjusted, psychologically stable individual who identifies and is satisfied with gender assignment. The MEDSI tool may also be beneficial to families and health care teams facing surgical decisions under other circumstances. The tool can be used to encourage thoughtful consideration of ethical principles in complex decision-making processes, maximizing patient respect and autonomy. DECLARATION OF INTEREST The authors report no conflict of interest. The authors alone are responsible for the content and writing of the paper.
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