Recent research emphasizes the influence gender identity and sexuality can have on end-of-life care1. Multiple studies have been conducted in pursuit of better understanding the palliative care needs and unique perspectives of individuals who identify with diverse gender identities and sexualities. A recent study that focused on needs of LGBTQ older adults in American long term care settings concluded that LGBTQ patients desire inclusive palliative care within an environment in which they feel respected and feared discrimination, mistreatment, and dependence on health care providers2. Similar results have been found within a Canadian context as well1,3.
These findings are further echoed in a 2017 review authored by Canadian researchers Stinchcombe et at.4. These authors analyzed 25 articles to determine the care needs of LGBTQ older adults at end-of-life and identify strategies to facilitate a “good death experience” for LGBT patients. The authors identified 6 broad themes observed across the literature. The themes are as follows:
- Social Support and Chosen Family
- Strong social support networks contribute to patient well-being
- Decision-making should not be exclusive to biological family members, rather, if possible, defer to patient’s Chosen family
- Respectful and open conversations about patient’s intimacy needs
- Health Status
- As a historically marginalized population, LGBT individuals are at a higher risk of experiencing physical and mental health co-morbidities compared to non-LGBT individuals
- Fear of discrimination
- Fear of discrimination or mistreatment within the healthcare system, particularly within institutional settings
- Study noted that the level of fear and distrust in the healthcare system may be connected to geographic location and number of local LGBT-centered health services
- Lack of knowledge and preparedness
- Limited knowledge and implementation of advanced care planning and legal steps that can be taken to establish end of life preferences
- Cultural competency in the healthcare system
- Concerns about cis- and heteronormative perspectives of the healthcare system
- Inaccessible healthcare services
These authors recommend education and training initiatives for healthcare workers and social workers involved in palliative care about the palliative care and/or end-of-life needs and values of LGBT patients. The authors of the review indicate that previous research has shown that LGBT-aging training is an asset to healthcare providers and can improve quality of care.
Further recommendations to improve cultural competency within the Ontario medical framework made in a 2016 report commissioned by the Law Office of Ontario5 include:
- Establishing open communication regarding sexual orientation and gender identity
- Including the experience of 2SLGBTQ individuals in future education and training initiative
- Providing information about advocacy services to patients and allies
- Provide voluntary opportunities for patients to disclose sexual orientation, gender identity, preferred pronouns.
- Create supportive and inclusive environments by promoting 2SLGBTQ pride flags and symbols
- Establish inclusive policies and regulations
Another important conclusion made by the authors of the 2017 review and 2016 report is that the end-of-life needs transgender, bisexual and two-spirited individuals is underrepresented in the literature4,5. As such, healthcare providers should carefully consider the context of research studies to ensure that appropriate conclusions are being made and the relevant application of research knowledge is being practiced.
- Wilson, K., Kortes-Miller, K., & Stinchcombe, A. (2018). Staying out of the closet: LGBT older adults’ hopes and fears in considering end-of-life. Canadian Journal on Aging/La Revue canadienne du vieillissement, 37(1), 22-31. Retrived from: doi:10.1017/S0714980817000514
- Putney, J. M., Keary, S., Hebert, N., Krinsky, L., & Halmo, R. (2018). “Fear runs deep:” The anticipated needs of LGBT older adults in long-term care. Journal of gerontological social work, 61(8), 887-907. https://doi.org/10.1080/01634372.2018.1508109
- De Vries, B., Gutman, G., Humble, A., Gahagan, J., Chamberland, L., Aubert, P., … & Mock, S. (2019). End-of-life preparations among LGBT older Canadian adults: The missing conversations. The International Journal of Aging and Human Development, 88(4), 358-379. https://doi.org/10.1177/0091415019836738
- Stinchcombe, A., Smallbone, J., Wilson, K., & Kortes-Miller, K. (2017). Healthcare and end-of-life needs of lesbian, gay, bisexual, and transgender (LGBT) older adults: A scoping review. Geriatrics, 2(1), 13. https://doi.org/10.3390/geriatrics2010013
- Stinchcombe, A., Kortes-Miller, K., & Wilson, K. (2016). Perspectives on the Final Stages of Life from LGBT Elders Living in Ontario. Law Commission of Ontario.