Abstract
Example Case
A 15-year-old male is meeting with his oncologist for the first time after a diagnosis of Ewing sarcoma. The physician discusses the treatment options, prognosis, and potential for long-term side effects of the planned treatment. She mentions that the patient is at risk for reduced fertility and begins to discuss options for banking sperm. The young man is staring at the wall and looking uncomfortable as his mother asks questions about the banking process. The oncologist turns to the young man and asks if he is interested. He shakes his head no. The oncologist responds “Okay” and changes topic, beginning to discuss the required line placement, when his Mom interrupts—“Wait! I think this is really important…” The son gives her the look.
Background and Introduction: Surviving Cancer and Parenting Attitudes
The son is not alone in his discomfort. His mother is not alone in wanting to discuss fertility preservation. The oncologist must reach agreement with patients and family members on multiple issues prior to initiating treatment. Frank discussion of the potential sequelae of chemotherapy and radiation should ideally include the possibility of impaired fertility or infertility. 1 With some treatment regimens, the chance of infertility is greater than 80%, while in others it is less than 20%. 2 Given that it is currently not possible to predict precisely the risk of infertility in cancer, an increasing number of providers offer fertility preservation to all newly diagnosed cancer patients as “insurance” in the setting of uncertain risk. 3 For males, sperm banking is currently the only widely available and proven method of fertility preservation prior to cancer therapy.4,5 Most adult male survivors express the desire to have children, yet according to one study, only 25% would consider using anonymous donated sperm. 6 In spite of survivors' attitudes supporting the utility of sperm banking and recent policy recommendations from the American Society of Clinical Oncologists, 5 some oncologists may avoid discussing the subject with adolescents or young adult patients due to concern that the conversation will be uncomfortable or complicated for all involved. 7
At our institution, there have been quality improvement efforts over the last several years to ensure that adolescent males over the age of 12 years are offered sperm banking. However, these efforts identified an interesting bioethical issue about what to do when the adolescent does not want to talk about sperm banking. Initial discussions between this paper's authors (who have backgrounds in urology, oncology, and bioethics) considered the issue in the context of adolescent cancer and technical aspects of sperm banking. These discussions helped us understand that in addition to the clinical and psychological challenges of fertility preservation, the key ethical issue related to balancing adolescents' expressed wishes and their long-term interests. After further discussion with 10 colleagues at our institution (see Acknowledgments), including physicians, nurse practitioners, and nurses from oncology, urology, and reproductive endocrinology, all of whom interact with adolescent patients at various points along the sperm banking process, we better appreciate a dynamic in the family's decision making process. In some cases, the patient seems not at all interested in sperm banking, but the parent (often the mother) pushes strongly for the patient to attempt sperm banking. As in the previously described case, the mother pursues the sperm banking discussion, whereas the adolescent patient attempts to end the conversation as quickly as possible. What would be the most appropriate course for the oncologist: to drop the conversation or to continue a little further?
Why Challenging the “No” is Important
The scenario above is one that oncologists who care for adolescents may encounter in their clinical practice. The young men may sometimes appear indifferent or avoidant. They may be thinking about other things and parenting is not yet in the forefront of their minds.8–10 In this scenario, we suspect that the mother is projecting into the future. She may be reflecting on what it means for her to be a parent and imagining what parenting could mean to her child. She may want her son to bank sperm to preserve his options for future fatherhood.
From the discussions with our colleagues, when a young man is not interested in banking, the issue may be dropped and the discussion moved on to other pressing topics such as planning the start of cancer therapy. The clinician might feel that ending the fertility preservation conversation is a gesture of respect for adolescents' opinions and desires. It may also reflect a clinician's own knowledge, attitude towards, and comfort with the discussion. When the risk of infertility is “low”—less than 20%—the clinician may feel time is better spent on other aspects of treatment given that the young man is not interested. Sperm banking is, after all, an optional aspect of cancer care. Therefore, accepting a patient's decision not to bank is less problematic than accepting a “No” to chemotherapy.
While the adolescent's agreement is both ethically and pragmatically necessary, the reasons behind a patient's initial lack of interest should be probed by the oncology team. The concept of “assent,” as described by the American Academy of Pediatrics' Committee on Bioethics, 11 emphasizes the importance of engaging children in a developmentally appropriate context and involving them in decision-making as feasible. Assent does not mean that all objections should be respected, but rather that respect can be demonstrated by the manner in which the child is engaged and when efforts are made to take concerns into account. Of course, in the context of sperm banking, patient willingness to cooperate is critical and the art of the conversation is to engage the patient so that agreement is forthcoming. Continuing to keep the conversation open can allow the adolescent time to project into the future and consider what he might want as an adult. From our experience at Seattle Children's Hospital, and as others have described in the literature, many adolescent males who decided not to bank sperm later wished that they had attempted it. 12 Some patients felt that the medical staff too readily accepted their refusal. Young men who were initially hesitant were, in retrospect, glad that their parents and/or healthcare providers had encouraged them to reconsider. 12 As no one can predict which patients will later want children, it may be in the adolescents' best long-term interest to bank sperm at the time of diagnosis.
Throughout their treatment, adolescents may resist recommended elements of their cancer therapy. 13 When the stakes are high and the repercussions of treatment non-adherence are great, as in refusal of potentially curative chemotherapy, both oncology staff and parents often provide very strong encouragement for adolescents to follow the proposed treatment regimen. Ultimately, even for decisions about chemotherapy, adolescent agreement is necessary because of the practical requirements of treatment over a long period of time. However, special efforts to engage and persuade an adolescent to reach an agreement may be necessary.
Should fertility preservation be different? While providers have an obligation to respect an adolescent's preferences, particularly for something as personal as fertility, they also have an obligation to keep the patient's future choices open by encouraging sperm banking. The “right to an open future” is an important concept suggesting that others have obligations to protect children from decisions during childhood that might profoundly limit their decisions as adults, including reproductive decisions. 14 What is unique in this context is the concept's application to protect an adolescent from his own decisions. This reasoning is also reflected in a recent statement from the American Society for Reproductive Medicine's Ethics Committee. 15
It may be more tempting not to pursue the fertility conversation if the proposed treatment regimen carries only a “modest risk” of infertility. A recent survey of oncologists found that the primary reason providers do not discuss fertility preservation options was they considered the patient's risk “not significant”—meaning less than 20%. 16 However, patients and parents may consider even modest risk to be significant. 17
Although parents are likely to understand the concept of long-term risk of infertility, at the time of diagnosis many adolescents do not appreciate or act to address long-term risks.12,17 Parents may feel comfortable strongly encouraging their son to bank sperm because over the years they have made many important decisions about their child's future.
The Conversation
The conversation about treatment-associated fertility risk and the possibility of fertility preservation is, in and of itself, an important aspect of caring for the newly diagnosed adolescent cancer patient, regardless of the patient's final decision about preserving fertility. The discussion about fertility preservation may give families hope for the future and belief that providers believe in the patient's potential to survive his cancer. The conversation can also send a message that the patient himself, not just his disease, is important to his healthcare providers. In the early days of the relationship between the newly diagnosed cancer patient and his healthcare team, a frank and considerate discussion about sperm banking can set the tone for the therapeutic relationship.
The goal of the sperm banking conversation is to protect the patient's future fertility and promote long-term quality of life. The conversation provides structure for a discussion involving sexuality and future fatherhood that, prior to the cancer diagnosis, may never before have arisen between an adolescent and his parents. Becoming a parent is a major life decision. Probing into the reasons behind a patient's initial refusal to sperm bank may lead to an important dialog at a crucial decision-making point in the patient's reproductive life.
As noted by Quinn et al. 7 in a recent review of decision-making and fertility preservation in teens, further empirical research is needed to determined the best strategies to facilitate decision making. Comfort with social media may also open new channels for peer communications to help adolescents consider these issues.
Recommendations
Based on our collective experiences, we offer the following suggestions to promote a productive conversation about sperm banking with an adolescent patient and his parents:
• Designate a small group of providers who will discuss fertility preservation with newly diagnosed patients. This strategy allows specific clinicians to become very comfortable with the subject matter and its emotional overlay, putting patients and families at ease. The designated clinicians also gain valuable experience with this patient population and become skillful in handling disagreements between adolescents and parents. We have found that telling families the offering of sperm banking is a standard part of patient care for all newly diagnosed adolescent and young adult males normalizes the discussion and greatly facilitates the conversation. • Offer the adolescent the opportunity to have an initial conversation of the topic, without parents present. Just as discussions about sex, alcohol, and tobacco are conducted in private between clinicians and adolescents, a similar standard should be considered for adolescent cancer patients. In our limited experience, parents rarely object to a private conversation between the provider and their son; however, others have described parents who preferred to be the gatekeepers of information related to sperm banking.
18
Following the initial conversation and with the permission of the young man, parents can be brought in and the provider can help relay the patient's position on sperm banking to the parents. This dialog may provide important information to parents about their adolescent's understanding of masturbation and facilitate later conversations at home. This practice may help alleviate some of the awkwardness and anxiety for all family members, as it has been shown that parents cannot always predict their child's experience with or attitudes toward masturbation.
18
• Schedule adequate time for the conversation, possibly even scheduling a separate appointment to discuss sperm banking. In many cases, cancer treatment does not need to start for several days. Following the clinic appointment, families often benefit from time to talk between themselves away from the clinic. Clinicians should attempt to allow sufficient time for the patient to make one or more trips to the sperm bank prior to starting therapy. We recognize that this may not be feasible when an adolescent is critically ill (i.e., tumor lysis, respiratory compromise, or intractable pain). • Use simple, straightforward language delivered in a matter-of-fact way to facilitate the discussion.
12
Avoid euphemisms and analogies, and speak directly about the necessary steps for banking. Checking in with the young man to assess his experience with masturbation is important, since patients with limited or no experience may have less chance of success at the sperm bank. The possibility that the patient may not be able to produce semen for banking should be discussed up front. Young men who do not produce a sample often feel a sense of failure and believe they have disappointed their families. Many patients shared with providers that they wished they had been warned in advance that they might not be successful.
12
• A handout written in clear and simple language, with age-appropriate design, is another step in normalizing the sperm banking process for adolescent patients. Handouts also allow patients to learn new information in private at their own pace. Contact information for the sperm bank should be included in these materials. • Provide referrals for resources for financial support to offset cost of banking.
Conclusions
Practitioners may find young men to be less engaged in discussions about sperm banking than in other aspects of their treatment. Attention to standardizing the approach to the conversation may mitigate concerns and encourage engagement. While assent for sperm banking is necessary from both an ethical and a practical standpoint, we recognize that the patient's cognitive and emotional development may affect how seriously he considers parenting, as well as his perception of long-term risk. As advocates for patients, oncology practitioners should probe into adolescent patients' initial reluctance to bank sperm when they encounter this situation. We suggest that the fertility preservation conversation be a priority at the time of diagnosis and that a “No” not result in an immediate change of the subject.
Footnotes
Acknowledgments
We thank the following providers for their insights and experiences: Leah Kroon, ARNP; Sue Ehling, ARNP; Laurie Eisenberg, ARNP; Karen Wilkinson, ARNP; Sarah Sullivan; Doug Hawkins, MD; Lynn Davis, MD; Kat Lin, MD; and Chip Muller, PhD. Additionally, we thank Maureen Kelley, PhD, for her guidance and Anthony Back, MD, for review of a draft of the manuscript.
Disclosure Statement
No competing financial interests exist.