Recommendations to reduce inequalities for LGBT people facing advanced illness: ACCESSCare national qualitative interview study

Abstract

Background:Lesbian, gay, bisexual and/or trans (LGBT) people have higher risk of certain life-limiting illnesses and unmet needs in advanced illness and bereavement. ACCESSCare is the first national study to examine in depth the experiences of LGBT people facing advanced illness.Aim:To explore health-care experiences of LGBT people facing advanced illness to elicit views regarding sharing identity (sexual orientation/gender history), accessing services, discrimination/exclusion and best-practice examples.Design:Semi-structured in-depth qualitative interviews analysed using thematic analysis.Setting/participants:In total, 40 LGBT people from across the United Kingdom facing advanced illness: cancer (n = 21), non-cancer (n = 16) and both a cancer and a non-cancer conditions (n = 3).Results:In total, five main themes emerged: (1) person-centred care needs that may require additional/different consideration for LGBT people (including different social support structures and additional legal concerns), (2) service level or interactional (created in the consultation) barriers/stressors (including heteronormative assumptions and homophobic/transphobic behaviours), (3) invisible barriers/stressors (including the historical context of pathology/criminalisation, fears and experiences of discrimination) and (4) service level or interactional facilitators (including acknowledging and including partners in critical discussions). These all shape (5) individuals’ preferences for disclosing identity. Prior experiences of discrimination or violence, in response to disclosure, were carried into future care interactions and heightened with the frailty of advanced illness.Conclusion:Despite recent legislative change, experiences of discrimination and exclusion in health care persist for LGBT people. Ten recommendations, for health-care professionals and services/institutions, are made from the data. These are simple, low cost and offer potential gains in access to, and outcomes of, care for LGBT people.

Disparities in lymphoma on the basis of race, gender, HIV status, and sexual orientation

“…Frisch et al evaluated the association of sexual orientation and malignancy and determined an increased incidence of NHL, as well as anal cancer and Kaposi sarcoma among homosexual men (38). Various studies note an increased incidence of depression in the LGBTI community as a result of stigmatization and discrimination; the presence of depression in general has been noted to increase the risk of malignancy (33,36,39,40). Additionally, compared with cis-gender patients and individuals in heterosexual relationships, LGBTI individuals often have lower rates of insurance coverage (35).…”

“…Partners report that feelings of loss are often not validated by the medical team. Also, issues of medical decision-making and other legal matters are often complex, which can result in the patient’s biological family rather than the patient’s “chosen family” or partner making end of life decisions (40,43). …”

“…For example, malignancy alone is a risk factor for venous thromboembolic disease; however, this risk is further amplified by the use of supplemental hormones being used by many transgender patients. In a recent survey of transgender cancer patients in the United Kingdom, patients diagnosed with thromboembolisms expressed the challenges they face when prioritizing the prevention of additional clots versus the possibility of losing their gender identity by discontinuing hormonal therapy (40). Additionally, given the limited data available to guide the management of transgender patients, particularly from an oncology perspective, optimal screening and prevention measures in this population are not currently known (40,41).…”

“…In a recent survey of transgender cancer patients in the United Kingdom, patients diagnosed with thromboembolisms expressed the challenges they face when prioritizing the prevention of additional clots versus the possibility of losing their gender identity by discontinuing hormonal therapy (40). Additionally, given the limited data available to guide the management of transgender patients, particularly from an oncology perspective, optimal screening and prevention measures in this population are not currently known (40,41). Further compounding end of life challenges, many transgender patients do not obtain legal documentation of their preferred gender identity often for fear of the loss of insurance coverage or other challenges from a health-policy perspective.…”

“…Further compounding end of life challenges, many transgender patients do not obtain legal documentation of their preferred gender identity often for fear of the loss of insurance coverage or other challenges from a health-policy perspective. As a result, medical documents including death certificates document the patient’s gender at birth rather than their preferred gender (40). …”