Social accountability and improving care for sexual and gender diverse patients

A word about language

I use the terms sexual and gender diverse and queer as umbrella terms to describe individuals who are two-spirit, lesbian, gay, bisexual, transgender, intersex, and non-binary or who exhibit attractions or behaviours that do not align with heterosexual or traditional gender norms. I am a White, able-bodied, cis-gender, lesbian, healthcare professional and can only speak from my position of relative privilege. However, I recognize that many people in the queer community have differing experiences, especially those with intersecting social identities that compound sources of oppression.

Micro level: Patients and carers

The heteronormative healthcare environment in the 1980s and 1990s was not particularly supportive for SGD staff who were encouraged to leave their identities (or “private lives”) at home. This was not the case if you were heterosexual, when small talk about spouses and children was encouraged. Shame has been described as “the emotional core of the experience of stigma,” ¹³ and my queerness was a source of secret shame. I rarely came out at work at this time.

My first experience with SGD patients receiving radiation therapy was young men with AIDS who had Kaposi’s sarcoma. The media called it “the gay plague,” and we would wear gowns, masks, and gloves to treat them and ask them to come at the end of the day. Many patients did not disclose their queer identities; however, they had little choice but to be out. Sometimes during an intake consultation with a radiation oncologist, I would understand that the male “friend” sitting quietly next to the patient was their partner, although the doctor would not. In the early 1990s, I began to wear a small pink triangle pin on my lab coat to signal my queer identity. Patients would sometimes come out to me and there was always a sense of comfort on both sides.

Years later, I wrote about an encounter with a patient that brought home to me the significance of the need for better care (the name “Dr. Benson” is a pseudonym):

I met a gay patient last week. He had late stage lung cancer and was in a bad way, here for palliative treatment. He was with his partner, and they held hands through the consultation with Dr. Benson. She’s one of my favourites, takes her time, sits with them longer than the other radiation oncologists. I was there to take him away afterwards, to be x-rayed and marked up for treatment. Just before she left, she hugged him and his partner, handed over her card and told him to call her anytime.

I started looking for more support at work, for myself but also for patients. There wasn’t much. I went to a diversity fair and left with a leaflet from a religious group that explained how homosexuality was an offence against God. I had very little power at work and still felt shame in my identity. Although I wanted to make a difference for patients, I struggled to see how beyond the individual patient level. I did have a strong sense, however, that my being out had made a difference, and I wanted to explore that further.

Meso level: Policy and research

I moved from a clinical role into education, first as a clinical educator and later as a provincial professional practice leader. I also undertook further education, including a master’s degree with a research focus. With more professional experience and roles that allowed broader scope, I was able to expand my interest in SA. I found that research added validity to my lived experience and gave me more confidence that the care and support gap for SGD people in my field was a significant problem.

Speaking up in meetings and advocacy was still difficult. I felt vulnerable, for example, when colleagues questioned why we needed to expand gender options on intake forms, incorporate inclusive language, and diversify images in patient education materials. In a committee to design posters to advertise cancer support groups, I asked why all the images depicting women were highly feminine, with long hair and make-up. I was told “any of them could be gay” and that perhaps I was biased. As a result of that discussion, I volunteered for a photoshoot for new images for the campaign and I turned up looking as butch as possible! Shortly afterwards, I helped found the first SGD group for the provincial agency, which included patients from the community. We developed training materials for staff and began the long process of overhauling forms and procedures.

Twenty years after my encounter with the gay patient who had lung cancer, I was still very interested in exploring the factors that influence staff coming out at work. I was lucky enough to find a doctoral program in Educational Leadership and Policy at the University of British Colombia that had the flexibility to support a major research project closely tied to my interests and identity. I relished having the freedom to finally explore this issue in depth, and early coursework resulted in my first publication on the subject. ¹⁵ I also began to deliver national and international talks on the topic of improving cancer care for SGD people. To explain stigma and identities I would offer, “I am a lesbian” and the sense of vulnerability and lingering shame would make my voice quake. I would do it anyway.

Macro level: Education and support

I now work at the University of Alberta where I teach in an undergraduate radiation therapy program. My focus for the last few years has thus been on education rather than local policy change. Later in my career, I find myself able to leverage my accumulated professional privilege to help affect change, and importantly, I feel pride rather than shame in my SGD identity.

Most healthcare professionals lack undergraduate education on the needs of SGD patients. ¹⁶ After a curriculum review of our own 4-year radiation therapy program, we found that less than 5 hours of class time was dedicated to SGD healthcare; subsequently, much needed content was added for undergraduate students. ¹⁷ With the support of allies and other faculty with marginalized identities, we developed a “person-centred care” stream in an oncology course to address other areas that are lacking (e.g., care for immigrants and refugees undergoing radiation therapy).

To contribute to the continuing professional development of MRTs nationally, I led a group to develop a certificate course for CAMRT on cultural competency in the care of SGD patients. As the Editor-in Chief of the Journal of Medical Imaging and Radiation Sciences, I developed a new submission category (healthcare narratives) to open the journal up to diverse voices, both healthcare professionals and patients. For the first time, we are publishing impactful work on race and racism, SGD inclusive care, Indigenous experiences, and other intersectional professional issues. ¹⁸

In the last year of my doctorate, I applied for a Canadian Institute of Health Research (CIHR) grant with two other graduate students to develop a web site called Queering Cancer. ¹⁹ The web site, with associated social media and advocacy activities, has been successfully supporting patients and educating healthcare professionals for 3 years. A second CIHR grant in 2023 has recently allowed us to evaluate the impact of the organization, and it is gratifying to see we’ve made a positive difference in many patients’ cancer care experiences. It has also brought me full circle from my early clinical career, and working with patients again is deeply rewarding. Increasingly, the work I do closely aligns with my values, which is a rare gift.

Alongside Queering Cancer, I have continued to research and publish in the area of coming out.^14,20 A recent post-doctoral fellowship has extended the research scope to other oncology healthcare professionals. Advocating for better and more inclusive care for SGD patients goes hand-in-hand with improving the workplace experiences of SGD staff. Staff that are better supported and more out at work can also provide a sense of safety for their queer patients.