Cancer Knowledge Network
5 November 2015
Adolescents and young adults (AYAs) with cancer are informed of their fertility preservation (FP) options with the intention that, if possible, they are able to consider having biologically-related children after treatment. The increasing social and political inclusivity of lesbian, gay, and bisexual (LGB) populations, and advancements in fertility treatments, have encouraged a growing number of LGB AYAs to consider biological parenthood. For LGB AYAs, the process of FP is likely different than for heterosexual AYAs. Decisions surrounding FP may be shaped by legal regulations (e.g., prohibitions surrounding same-sex marriage, adoption or surrogacy), as well as negative social attitudes and discriminatory practices that perpetuate stereotypes that LGB individuals and same-sex couples are morally unfit to parent. LGB AYAs with cancer also may not have the same general reactions and responses associated with possible infertility as their heterosexual peers. How these experiences influence LGB AYAs’ concerns surrounding FP is important to bear in mind.
Yet, previous research indicates that assumptions of heterosexuality are an ongoing encounter in healthcare among LGB populations. Acts of negative bias may include: not being asked directly about sexual orientation or gender identity, a lack of positive LGB signs, inclusive brochures and educational materials, and a providers’ lack of knowledge and training on LGB-specific healthcare concerns and needs. Stigmatizing attitudes may consequently result in a certain unwillingness to disclose sexual orientation, potentially leading to increased stress, negative health outcomes and limited referrals or follow-ups to appropriate care providers. Alternatively, when providers make reference to sexual diversity, LGB AYAs are often more forthcoming, leading to positive health and mental health outcomes, and the promotion of health-seeking behaviours. Practices that represent the interests, needs and experiences of LGB AYAs may increase access to care and foster equitable and informative service provision.
The difficulty is that adolescents and some young adults with cancer are often accompanied to the hospital by their parents; healthcare providers must try to balance patient engagement with parental involvement. Although parents’ concerns should be addressed, non-disclosure of sexual orientation may be a deliberate action to uphold family values and to mitigate potential conflict. Issues regarding confidentiality, privacy and concerns over parental disclosure are important considerations for LGB AYAs in healthcare settings. The complexity pertaining to family dynamics and family relationships presents an added ethical dimension when discussing FP for AYAs with cancer. Providers are responsible to deliver accurate FP information that is inclusive and respectful of LGB AYAs with cancer as a routine standard of practice. Practices that recognize the increasing visibility of LGB AYAs can increase access to care and foster informative, relevant and equitable service provision.
This commentary is not meant to suggest an intentional or malicious bias of healthcare providers, or to disregard affiliations and organizations that have established policies to address LGBT care. For example, the American Medical Association, the Association of American Medical Colleges, and the American Academy of Nursing have position statements that promote commitment to best practices and competent care across LGB populations. In particular, the American Academy of Paediatrics and the National LGBT Cancer Network, have both produced equitable and comprehensive care standards for sexually diverse youth. The LGBT Cancer Network, specifically, offers training programs and recommended strategies on how to address and identify best practice when working with LGB populations.
A standard of practice can be created that reflects FP for all AYAs with cancer, inclusive of LGB populations. Comprehensive and responsive guidelines, standards and information are critical to reflect patient diversity within oncology teams.
Recommendations for Providers:
• The use of gender neutral language in assessment and intake forms and when referring to a patient’s partner or prospective partner
• Recognize assumptions of patients’ sexual orientation, gender identity or partnership-status
• Identifying how questions on fertility/reproduction are primarily relevant only for heterosexual individuals and opposite-sex couples
• Attuned to decisions of non-disclosure, confidentiality and privacy within family-centered care
• Experiences and expectations of LGB AYAs when discussing sub-fertility, infertility or fertility preservation options- including experiences of institutional and individual levels of stigma
• Knowledge and familiarity with resources, referrals and support services for LGB AYAs who may be interested in pursuing fertility preservation
• Availability of relevant educational materials and opportunities for appropriate consultation and therapeutic support
• Educational programming, training & professional development for oncology team members
Recommendations for Policy:
• Online educational resources accessible to both patients and healthcare providers identifying sexual diversity
• Policy guidelines, tools and programming to develop inclusive and non-discriminatory FP information
• Training programs, practice manuals and evidence-informed strategies to work with LGB AYAs with cancer
• Directives that address age appropriate and sexually diverse material addressing distinct FP needs and experiences of LGB AYAs with cancer