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Who Makes Fertility Decisions in Pediatric Cancer Patients?

Young women and men facing cancer treatments are forced to confront not only their cancer diagnosis, but also the potential loss of their fertility. Each individual case and treatment plan may affect fertility differently; however, healthcare providers should inform their patients about fertility preservation options. At Northwestern, the Oncofertility Patient Navigator immediately reaches out to newly diagnosed cancer patients and their families to discuss options for preserving fertility. This decision is complex enough for an adult, but what happens if the cancer patient is a child? In a perfect world, two parents who have their child’s best interests at heart can discuss the situation and come to a joint decision as to how to proceed with the child’s treatment collaboratively and amicably.

As in many life situations, the ideal is far from a reality that it is much more complicated.  First it is important to bear in mind that families are asked to make life altering decisions on fertility shortly after their child has been diagnosed with cancer. The difference between fertility decisions with a cancer patient and an average person seeking treatment for infertility is time –cancer patients need to make decisions and begin fertility preservation procedures quickly.

Imagine you just find out that your 7 year old daughter has been diagnosed with cancer and now you are meeting with the Oncofertility Patient Navigator only hours after you’ve received this information. You are in this meeting with your husband who is not your child’s biological parent, but has been in the child’s life since she was a baby. The biological father has been involved, but not to the extent that the stepfather has. You disagree on how to proceed and your child’s young age prevents her from participating fully in the decision making process. The question then becomes, who has more authority in making the decision for the child – the mother and stepfather, the mother, the father, etc..?

Other issues may arise in the fertility preservation of legal minors, including an adolescent child disagreeing with his or her parents on whether or not to pursue fertility preservation. This could be basic adolescent rebellion or there could be some fundamental ideological or religious differences between the parents and the child that need to be addressed. A health care provider familiar with the ethical dilemmas in oncofertility may help guide the family to a resolution that is hopefully consistent with the beliefs and values of everyone involved.  It is important for the adolescent child to feel that they have some autonomy over their body and their treatment options; however, assuming that the parents have the child’s best interests in mind, they may be better equipped to make rational decisions at such an emotionally charged time.

Facing infertility is a difficult issue, but coupled with a cancer diagnosis and impending cancer treatment, it can seem overwhelming. Families face significant personal and ethical decisions when they are dealing with a minor’s fertility options.  These decisions become even more difficult when the families do not agree on how to proceed. In these instances, who has the final say? It’s a complex dynamic and one that needs to be explored more thoroughly as we examine fertility preservation in a pediatric cancer context. You can read more about this topic in “Whose Future is it? Ethical Family Decision Making About Daughters’ Treatment in the Oncofertility Context,” by Kathleen M. Galvin, PhD., and Marla L. Clayman PhD., in Oncofertility: Ethical Legal, Social, and Medical Perspectives.

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