Same-Sex Couples Matter in Cancer Care

Abstract

The authors hope this discussion will spark interest in examining the process of coping with cancer among sexual minority individuals and same-sex couples and lead to enhanced services for this underserved and underrepresented group.

The importance of couplehood in the context of cancer has been highlighted in recent national debates over same-sex marriage. Same-sex couples in Illinois, North Carolina, Indiana, and Georgia all sued for legal recognition in 2013 to 2014 when one member of the couple was diagnosed with or died as a result of cancer.^1–3 Despite this national attention, research on and integration of same-sex couples in cancer care remains inconsistent. Well-publicized studies have highlighted the powerful impact that heterosexual marriage has on cancer survivorship⁴ as well as the lack of data on the relationships of sexual and gender minority adults diagnosed with cancer.⁵ Our intention with this perspective piece is to outline areas in need of further development for this underserved population of couples.

Throughout this piece, we will use the term “sexual minority” to describe lesbian, gay, and bisexual persons and individuals with a same-sex partner. We recognize the need for research on transgender and gender minority individuals, but focus here on sexual minorities so as not to conflate sexual and gender minority issues. We refer to dyadic couplehood when describing the relationships of sexual minority individuals, but acknowledge that other relationship configurations (eg, nonmonogamous, triadic) may have beneficial effects on cancer-related health. We are interested in same-sex couplehood broadly, not only same-sex marriage, because legal marriage is not universally available to same-sex couples.

There are an estimated 420,000 to 1,000,000 sexual minority cancer survivors in the United States,^6,7 suggesting a population larger than other cancer populations that have received considerable research attention. Pediatric survivors, for example, number approximately 330,000 in the United States.⁸ Population-based studies have found that subgroups of sexual minority individuals have nearly 2× higher odds of having a history of cancer than their heterosexual counterparts, so the actual number of sexual minority individuals diagnosed with cancer may exceed these estimates.⁹

A majority of sexual minority adults enter into committed romantic relationships, and same-sex partners of sexual minority patients with cancer are likely to play a significant role in caregiving and providing support.¹⁰ The importance and unique aspects of these contributions have been overlooked in cancer care and research. In a recently published study, Aizer et al⁴ discussed the protective effect of heterosexual marriage on cancer survival and outlined four potential underlying mechanisms: earlier and better access to care among married patients, better adherence to treatment, less psychological distress, and better immune function. All of these mechanisms have the potential to function differently among sexual minority individuals and same-sex couples than they do in heterosexual married couples.

In terms of earlier and better access to care, patients in same-sex relationships may hesitate to present for treatment and/or may withhold information about their sexuality bcause of fear of discrimination.^11,12 Lack of disclosure in this population has been shown to increase distress and negatively affect referral to appropriate ancillary care and health outcome.^13,14 Even in situations where a sexual minority patient does disclose and access appropriate care, it is unknown how often same-sex partners participate in this care. Attending a clinic visit as a same-sex couple can be a tacit form of disclosure and may raise fears of discrimination and prejudice once the patient's sexuality and relationship status are known.¹¹

The same fear of exposure to prejudice that limits same-sex partners' attendance at clinic also limits their inclusion in medical decision making and involvement in treatment adherence. Heterosexual couples often involve their partners in medical care decisions,¹⁵ but it is unknown how frequently sexual minority patients involve their same-sex partners in these decisions. Same-sex partners are less likely than heterosexuals to share insurance coverage and financial benefits related to health care, although this disparity may be reduced in the wake of the Affordable Care Act.^16,17 If same-sex partners are excluded from both insurance benefits and participation in cancer care visits, they may be less aware of the treatment plan and thereby limited in their ability to support the patient's treatment adherence. Underscoring the importance of engaging both members of the couple, support from same-sex partners has been shown to improve medication adherence in other disease contexts when this support is overtly solicited.¹⁸

In terms of psychological distress, it may be that enhanced psychological wellness, rather than pragmatic aspects of marriage, predicts improved survival. Psychological distress is associated with a nearly two-fold increase in cancer-related mortality.¹⁹ This increased risk of mortality is particularly salient for sexual minority individuals, who experience psychological distress at 1.5 to 3× higher rates than heterosexual individuals.²⁰ Emerging evidence indicates that elevated distress is also seen among sexual minority patients with cancer.²¹ The literature on heterosexual and same-sex relationships consistently shows the benefits of couplehood, and marriage in particular, in reducing psychological distress.²² Same-sex couples may not have had the opportunity to establish legal recognition of their relationship through marriage and may instead be living in marriage-like relationships or civil unions. Lack of legal recognition may prevent the benefits of partnership from translating into enhanced psychological wellness.²³

In terms of improved immune function, data from heterosexual married couples have consistently revealed that marital relationship quality is associated with immune response.²⁴ In the context of chronic disease, marriage improves immune biomarkers, which in turn predict better clinical outcomes.²⁵ For same-sex couples, the additional factor of chronic stress resulting from prejudice and discrimination may impinge on immune function.²⁶ Data from other minority groups have shown that exposure to prejudice and discrimination results in increased immune and physiologic reactivity and increased inflammation.²⁷ Few studies have examined immune function among sexual minority individuals. One recent study showed that exposure to prejudice increases inflammatory biomarkers,²⁶ and another showed that disclosure of sexual minority identity improves inflammation.²⁸ Neither of these studies took relationship status into account, and neither examined sexual minority individuals affected by cancer.

There are a number of additional psychosocial concerns that are of particular relevance for sexual minority persons. Sexual minority individuals are more likely to have experienced familial alienation, bullying, and exposure to trauma during development.²⁹ Consequently, these individuals experience higher rates of depression, suicide attempts, anxiety disorders, post-traumatic adjustment problems, and substance abuse disorders^20,30 than the general population. Collectively, these risk factors can constrict the range of social support and coping skills that sexual minority individuals can bring to bear when they or their same-sex partners are diagnosed with cancer. The knowledge base from research with heterosexual married couples affected by cancer may not generalize to same-sex couples, given their exposure to these risk factors.

We conclude with a call for intensified education, services, and research regarding sexual minority individuals and same-sex couples affected by cancer. Ensuring a nondiscriminatory clinical environment with culturally competent staff and providers, educated about the unique needs of sexual minority patients, could help these patients to disclose their minority status and improve access to appropriate care. Integrating same-sex partners into cancer care decision making could improve adherence to treatment, and bolstering support between same-sex partners could reduce psychological distress and improve immune function. Additional funding for clinical research on sexual minority patients could address some of the major gaps in the science at present.

It is important to note as well that the literature on sexual minority cancer survivors and same-sex couples coping with cancer is only just beginning to be developed. Existing studies have primarily focused on epidemiologic descriptions of health disparities.^9,31,32 We call for additional research on the needs of sexual minority patients with cancer and their partners; qualitative or mixed-method studies aimed at asking sexual minority survivors to discuss unmet needs in their own words will be important in establishing research priorities.³³ Socioculturally tailored interventions could then be developed based on these priorities, testing patient-provider communication strategies around sexual minority identity and/or involving same-sex partners in couples-based approaches traditionally targeted at heterosexual dyads.

Cancer has played a major role in debate about same-sex marriage in the United States. It is likely that same-sex couplehood is playing a reciprocally major role in the cancer experience of sexual minority patients with cancer. Unfortunately, little is known about these relationships in general, and less is known about how they function in the context of cancer. We hope that this perspective piece will spark interest in examining the process of coping with cancer among same-sex couples and lead to enhanced services for this underserved and underrepresented group.

Authors' Disclosures of Potential Conflicts of Interest

Disclosures provided by the authors are available with this article at jop.ascopubs.org.

Author Contributions

Conception and design: All authors

Manuscript writing: All authors

Final approval of manuscript: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Same-Sex Couples Matter in Cancer Care

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or jop.ascopubs.org/site/misc/ifc.xhtml.

Charles Kamen

No relationship to disclose

Karen Mustian

No relationship to disclose

Mallory O. Johnson

No relationship to disclose

Ulrike Boehmer

No relationship to disclose