Intersectionality matters: Building on analysis of sex and gender in end-of-life care

Dear Editor,

Hudson et al.’s ¹ new study contributes to our knowledge that “sex matters,”^2,3 but it does not just consider, as it is frequently the case with sex and gender in palliative care, “male” or “female” differences (our italics). Their sequential mixed-methods design demonstrates the value of routine data and mixed methods and is sensitive to even minor staff perspectives on experiences of gendered care. We would like to begin by congratulating the authors for drawing attention to this overlooked issue and, we would like to offer three observations that potentially expand the implications of their results.

The first problem is related to the problem of missing data. As the authors note, striking but unsurprising findings included the level of missing data on gender identity, sexual orientation and ethnicity. This is not a palliative issue alone; however, there is potential for the invisibility of sexual and gender minority people to persist at the end of life when holistic, and person-centred care is most important. Sensitive training and reform at the systematic level to narrow the uniform gap of demographic data collection may mitigate this concern.^4,5

Second, the role of intersectionality. Complementary qualitative results depict that most dimensions of inequalities are influenced by gender; however, it also interacts with age, ethnicity, and socioeconomic status regarding access to services. However, the data limitations mean that there is scant quantitative evidence on this connection. Explicit incorporation of intersectional paradigms in future service evaluations may likewise illuminate how multiple and intersecting identities contribute to the amplification of unjust circumstances of end-of-life care.^6,7

Third, supporting carers and staff. The study highlights historical gendered caregiving roles with an inherent imbalance where women assume an excessive emotional and physical burden. This is similar to findings from international literature on differences in caregiving.^8,9 There is a need to intervene at the level of patients and carers at risk of burnout and financial distress. Staff discomfort around discussing gender identity may also suggest that organisational support and explicit communication policies and strategies, combining with tutors trained in LGBT+ aware education could also provide an atmosphere in which levels of confidence in discussing sensitive areas are maximised and fear of “saying the wrong thing” is minimised. ¹⁰

In conclusion, Hudson et al. ¹ provides a critical starting point. To take their findings further we need strong, representative data, intersectional analyses and a stronger emphasis on equity for patients and carers. When it does, palliative care can be true to its vision of personal, loving care for all.

Gita Arisara, SKM, MKMDepartment of Public Health, Faculty of Public Sciences, Sebelas April University, Sumedang, Indonesia Hana Fitria Andayani, SST, MKMDepartment of Public Health, Faculty of Public Sciences, Sebelas April University, Sumedang, Indonesia Zainal Fauzi, SPd, MPd, KonsDepartment of Guidance and Counseling, Universitas Islam Kalimantan Muhammad Arsyad Al Banjari, Banjarmasin, Indonesia Ani Yani, SPd, MHumDepartment of English Education, Atma Jaya Catholic University of Indonesia, DKI Jakarta, Indonesia Dominikus David Biondi Situmorang, SPd, MPd, MSi, CT, CPS, CBNLP, CFHPsyDepartment of Guidance and Counseling, Atma Jaya Catholic University of Indonesia, DKI Jakarta, Indonesia