AMA Journal of Ethics^®

Case

Andrew, 13, was recently diagnosed with acute myelogenous leukemia (AML). At his second appointment with the pediatric oncologist he and his parents were told about the standard induction treatment for AML: chemotherapy with a combination of anthracycline and cytarabine. The oncologist, Dr. Kessler, described the various side-effects of this course of treatment, including infertility. Andrew and his parents understood, and, after asking a few questions about scheduling, they agreed to start chemotherapy as soon as possible.

Later, while Andrew was out of the room, Dr. Kessler told his parents that if Andrew banked some sperm prior to the initiation of chemotherapy he would be able to have biological children in the future, in the event that his sperm became infertile secondary to his chemotherapy. She explained that banking sperm was a fairly simple procedure, requiring only that Andrew masturbate to produce the semen from which the sperm would be extracted to be frozen and stored. There was a banking facility nearby, which she could contact if Andrew’s parents were interested in learning more about the process. She asked their permission to speak with Andrew about the risks and benefits of sperm banking.

To Dr. Kessler’s surprise, Andrew’s parents not only refused their permission, but reacted to her proposal with horror. “We’ve worked hard to raise our son to be a good boy who would never think about doing anything as inappropriate and immoral as masturbation,” said Andrew’s father. “Yes,” his wife agreed, “suggesting to Andrew that he masturbate would upset him, so we insist that you not say anything about this to him. He has accepted that he might be infertile after this treatment is finished; let’s just leave it like that, and hope for the best.” Dr. Kessler agreed, and the appointment came to an end.

Commentary 2

The American Society of Clinical Oncology asserts that oncologists have a responsibility to discuss infertility risk with all patients treated during their reproductive years and that these discussions should take place as early as possible [1]. At the same time, physicians are charged to “do no harm.” If Andrew’s parents believe that their son will get upset at the suggestion of fertility preservation outside of the context of marriage, the physician’s duty to discuss risk must be balanced with the potential of causing psychological harm to both patient and family. Dr. Kessler, the oncologist in this case, is further challenged due to her unfamiliarity with this family (second appointment) and her surprise regarding the parents’ insistence that sperm banking not be addressed with their son. There are many factors that influence an adolescent’s candidacy for sperm banking including cancer diagnosis, treatment acuity, age, Tanner stage, religious orientation, cognitive functioning, and emotional maturity. I provide recommendations specific to this case study, but they may be generalized to other adolescent patients.

Communicating Fertility Risk in the Pediatric Oncology Setting

We know that both Andrew and his parents were present during the review of potential infertility as a result of his treatment for AML. Later, Dr. Kessler chose to initiate the discussion of sperm banking when Andrew was outside of the clinic room, and, because of his parents’ insistence, she agreed to refrain from further sperm-banking discussions. In retrospect, Dr. Kessler should have made a brief statement on sperm banking at the time of fertility-risk disclosure in the presence of both Andrew and his parents. Ideally her statement would have included the information that sperm banking is often recommended prior to the initiation of AML treatment to preserve the patient’s ability to father children in the future, as she was describing the various body systems affected by AML treatment. The advantage of this brief introduction is that it exposes the patient and his parents to the idea of fertility preservation without demanding an immediate response from them. Upon completion of the late-effects review, Dr. Kessler could have inquired globally whether the family had questions about “anything that I reviewed today,” thus creating another opportunity for sperm-banking discussions in a low-demand context. This approach would have also increased the likelihood of private discussion between Andrew and his parents, which in turn could have facilitated more expedient sperm-banking decision making and improved decision satisfaction regardless of the outcome.

It is not uncommon for teenagers and their parents to be highly distressed at the time of cancer diagnosis and during informed-consent and assent processes. In particular, difficulty in remembering and processing information related to cancer survivorship is often reported when the acute focus of the family is on cancer cure. To redress this problem, oncologists and their medical teams frequently assess and reassess the family’s understanding of cancer treatment and provide a stream of supplemental information on treatment-related topics designed to facilitate prompt and informed decision making and psychological adaptation to diagnosis.

Correcting Misconceptions, Promoting Flexible Thought, and Making Effective Referrals

Prior to a diagnosis of pediatric cancer, most families have never considered banking sperm. Furthermore, when teenagers think about reproduction, most focus on avoiding pregnancy—not preserving fertility. Consequently, many families are unacquainted with the process, demands, or options related to sperm banking and may be quick to make judgments or develop misconceptions regarding this sensitive topic. It’s in these cases that oncologists (or other members of the medical team) can significantly influence the decision-making process by sensitively querying familial rationales for not banking sperm, while at the same time correcting any misconceptions that the family (or parents in this case) may have.

The case study indicates familial communication about sexual behavior in Andrew’s family is poor and lacks recognition (or knowledge) of normal psychosexual development. Andrew’s parents have made two errors that can be modified. First, there is an assumption that by banking sperm, reproduction will take place outside of the confines of marriage. A clinician could reframe this assumption and explain that by banking sperm, Andrew and his future wife will maintain the option of having biological children (and grandchildren) in the future. Although it was not explicitly stated, it appears that both of Andrew’s parents object to the traditional method of collecting sperm (i.e., masturbation). Information on epididymal sperm aspiration, testicular sperm aspiration, or electroejaculation (all of which can take place under sedation) could have been highlighted as “nonsexual” options that could be exercised with their consent and Andrew’s assent.

Information of this sort could have also influenced Andrew’s father, who views his son as a “good boy who would never think about doing anything like that.” Rather than resigning to this rigid style of thinking (good boy versus bad boy), the physician could encourage Andrew’s father to think more flexibly and consider sperm banking as a function of fatherhood and human development. Instead of focusing on the psychosexual, physical development could be emphasized with brief education addressing Tanner stage and secondary male characteristics (increased muscle mass, body hair, and deepening voice) as markers of impending manhood. If Andrew’s father seems receptive to this line of counseling, Dr. Kessler could go further and introduce or normalize the involuntary experience for nocturnal emission as the body’s way of demonstrating its biological readiness for fatherhood. Questioning resistant parents about their own identity as parents and interests in grandparenting can also facilitate a productive discussion about sperm banking as a means of salvaging their child’s fertility after cancer treatment.

Even senior oncologists with well-developed clinical acumen encounter families who identify barriers to sperm banking, including familial religious orientation, culture, tradition, socioeconomic status, perceptions of fertility risk, communication style, psychological functioning, and, as in this case study, refusal to discuss the pros and cons of sperm banking with the patient. When families present these or other barriers that fall outside of the medical scope, they should be referred to others within the hospital system who are trained in addressing the identified sperm-banking barrier(s). For example, families who are motivated to bank sperm but are conflicted due to their religious beliefs (masturbation, use of assistive reproductive technologies, etc.), should be referred to a hospital chaplain. Families experiencing banking-related conflict or anxiety should be referred to a clinical psychologist. Referral to social work is indicated if concerns develop regarding sperm banking, storage costs, or transportation to the fertility clinic.

A referral to a psychologist could have been helpful in reducing Andrew’s parents’ anxiety, which in turn affects flexible thinking. Furthermore, the consulted psychologist could facilitate increased communication among family members on topics such as infertility concern, sperm banking, discomfort with decision process, or the promotion of decision-making satisfaction regardless of the sperm-banking outcome. By utilizing a “barrier interventionist,” Dr. Kessler may have maximized the likelihood of Andrew banking sperm.

Conclusion

Sixty-seven percent of male cancer survivors desire children and prefer biological offspring whenever possible [2-4]. Survivors who experience infertility are at increased risk for emotional distress, including sadness and anger, particularly when fertility information was withheld at diagnosis [2, 5-9]. Infertility-related distress is a long-term issue that impairs intimate relationships and other quality-of-life outcomes up to 10 years post-cancer treatment among young adults [10]. One way to avoid these and other undesirable outcomes of infertility is to bank sperm. Currently, sperm banking among adolescent males is underutilized, although the reasons for this are not well understood.

This case represents a realistic situation that many of us encounter and struggle to resolve. It is our duty to communicate risk of infertility in a timely fashion and to recommend sperm banking when indicated. But in order to promote sperm banking among uninformed families, we must also correct misconceptions, promote flexible thinking, make effective referrals, and follow up with adolescents and families within the ethical confines of pediatric care [11]. Although it is often thought that sperm banking must take place prior to the initiation of cancer therapy, animal modeling suggests that developed sperm are stored in the epididymis up to 14 days prior to ejaculation, suggesting that sperm samples provided within 2 weeks of treatment initiation can be used [12, 13]. For those who initially refuse sperm banking, efforts to promote banking should continue during the first few weeks of treatment before the patient becomes azoospermic.

Sperm banking is not appropriate for everyone, and the needs of individual patients must be considered. Whether the goal is to improve decisional satisfaction, emphasize the possibility of fertility maintenance, or develop more flexible ideas of parenting, the goal of improving quality-of-life outcomes across all cancer survivors remains.