A rapid review of end-of-life experiences of the LGBTQ+ community by researchers at the University of Victoria and Victoria Hospice identifies potential practice changes to better meet the needs of this population.
The open-access article, “A rapid review of end-of-life needs in the LGBTQ+ community and recommendations for clinicians” was published in Palliative Medicine Feb. 17, 2022 by Lisa Lintott, Robert Beringer, Annie Do, and Helena Daudt.
The authors reviewed recent literature documenting the experiences of LGBTQ+ adults nearing end-of-life, identifying needs, barriers to care, and translating this into clinical recommendations.
“Our findings show that LGBTQ+ adults face many barriers at end of life, many of which are systemic and present throughout the life course. These barriers perpetuate a heteronormative culture which can negatively affect end-of-life care and the end-of-life experience. Our review also revealed gaps in the literature which warrant a closer look at how research and services are designed,” the authors say.
They found a lack of patient voices and the tendency to collate LGBTQ+ subgroups in the literature, which calls for codesign of end-of-life care research and services. They also found the compounding stressors experienced by LGBTQ+ adults affect the end-of-life care experience, which necessitates the need for implicit bias education to deliver authentic, inclusive care.
Here is an excerpt from the article:
What this paper adds
- Significant gaps in end-of-life care remain and future research should focus on the lived experience of LGBTQ+ older adults as less than half of the review study participants were LGBTQ+ individuals with direct lived experience (as either a patient or informal caregiver) in end-of-life care.
- Systemic barriers perpetuate a heteronormative culture that assumes or rejects individuals’ sexuality and gender preferences.
- The tendency to treat LGBTQ+ individuals as a homogenous group does not acknowledge that the distinct subgroups operate within a context of intersecting identities and social determinants of health.
- It is imperative to consider the complexities involved in making health systems LGBTQ+ affirmative. Changes must be perceived as authentic among LGBTQ+ individuals to be effective.
Implications for practice, theory, or policy
- Understanding the relationship between the different experiences of LGBTQ+ adults in the end-of-life context is crucial to address the specific needs of each sub-group within this community and support access to end-of-life care to all.
- The programming of services in end-of-life domains needs to ensure that LGBTQ+ individuals (and their support systems) are included as stakeholders.
- Incorporating LGBTQ+ cultural competence training and follow-up into healthcare providers’ continuing education which also involves a commitment to long-term self-reflection of implicit biases, implemented in tandem with organizational wide processes may better attend to the needs of this population.”
The study is part of a larger project that aims to optimize the inclusion of the LGBTQ+ community with hospice and palliative care services.