Angel Petropanagos considers the barriers to decision-making about fertility preservation for adolescent males with cancer
This summer, a 20-year-old man, who was 14 years old at the time of his cancer diagnosis, filed a complaint against his pediatric oncologist, after being diagnosed with infertility. Mr. A. now claims that hospital staff failed to provide him with adequate information about the risk of infertility caused by his cancer treatments. He maintains that although his pediatric oncologist mentioned the risk of infertility, his fertility preservation options were not emphasized. In addition, he is upset that he was not given written information about sperm freezing, nor given the option of providing a sperm sample prior to the onset of his chemotherapy.
His oncologist contends that the teen was “very clear in private conversation with him at the time that he would not have wanted to produce a sperm sample.” But, Mr. A. maintains that as a teenager he was too embarrassed to discuss sperm freezing (and the masturbation required to obtain a sperm sample) with a stranger. Mr. A. is also upset that his parents were not involved in the conversation about sperm banking. In the end, the oncologist was required to send a written apology to Mr. A.
Mr. A.’s case is not uncommon. Fertility is an important quality of life issue for many cancer patients and survivors, yet few male cancer patients freeze their sperm before treatment. Frequently, cancer survivors regret not freezing sperm or at least not having the opportunity to make an informed decision about sperm banking because it was not offered to them or, as in the case of Mr. A., the risk of infertility was not emphasized.
As is evident in the case of Mr. A., embarrassment and discomfort surrounding discussions about sperm freezing procedures can inhibit informed decision-making and deter some patients from choosing to freeze sperm. Of course, not all patients will choose to freeze sperm after receiving adequate information about fertility preservation, yet embarrassment about the topic should not prevent oncologists or other healthcare providers from discussing sperm freezing with their patients and their parents.
The above case illustrates the growing need to recognize and address the barriers to informed decision-making about fertility preservation technologies within the cancer context.
Next week, Lisa Campo-Engelstein and I will present a poster at the 2014 Oncofertility Conference, which outlines the barriers to decision-making about fertility preservation for teen boys. In the case of teen boys, there are a number of barriers to decision-making about sperm banking, including:
i. a lack of available information about sperm banking options;
ii. physicians, parents, and patients’ embarrassment with discussions about masturbation and fertility;
iii. teens’ anxiety surrounding sperm banking procedures;
iv. cultural concerns surrounding masturbation and reproductive technologies; and
v. whether adolescents can understand their future parenting wishes.
Our presentation outlines some ways to promote informed decision-making about sperm banking for teen boys. For example, we suggest that discussions about fertility preservation should become a part of the standard of care for cancer. In addition, healthcare providers should make decision-making tools available to their patients and offer private professional counselling for all patients. Teen-friendly sperm banking facilities should be developed and teens should be given more choice about and control over the timing, location, and details surrounding fertility preservation discussions and sperm banking procedures.
Sperm banking is a relatively safe, easy, and effective way to enhance adolescent males’ reproductive autonomy. The procedure itself presents little to no physical or psychological risk. Sperm freezing may be the only way for some cancer survivors to have genetically-related children in the future, should they desire to do so. Men may choose not to use their frozen sperm in the future. Men as a group experience relatively less social pressures than women to reproduce. Given the low risk and potentially high benefit of sperm freezing, it seems that fertility preservation is a valuable option for many cancer patients.
We maintain that healthcare providers have an obligation to provide cancer patients with adequate information about their infertility risk and fertility preservation options. Healthcare providers and parents should strongly encourage teen boys to seriously consider the use of fertility preservation technologies.
In Canada, organizations, such as Fertile Future are raising awareness about the importance of having access to fertility preservation options. The adolescent male cancer population is of particular concern because sperm banking discussion and procedures are potential sources of anxiety, embarrassment, and future regret for survivors. Improving cancer care in Canada requires strategies for promoting the well-being and reproductive autonomy of adolescent cancer patients.
Angel Petropanagos is a Postdoctoral Research Fellow at Novel Tech Ethics, in the Faculty of Medicine at Dalhousie University. @APetropanagos