Navigating the Complexities of Supporting LGBTQ+ Individuals at the End of Life
As the population of older adults continues to grow, so too does the need for compassionate and culturally competent end-of-life care. One group that often faces unique challenges in this arena is the LGBTQ+ community. A recent rapid review shed light on the barriers and unmet needs experienced by LGBTQ+ individuals as they navigate the end-of-life care system.
The review, conducted by researchers from the University of Victoria, examined 33 studies published between 2016 and 2020. The findings paint a complex picture, highlighting systemic issues that negatively impact the end-of-life experiences of LGBTQ+ adults.
Systemic Barriers to Inclusive End-of-Life Care
One of the key themes that emerged was the pervasive nature of systemic barriers faced by LGBTQ+ individuals. These barriers manifested at multiple levels, from institutional policies to individual interactions.
At the systems level, the review found that a lack of protective laws and discriminatory institutional policies created significant obstacles. For example, the absence of relationship recognition policies or gender identity protections left many LGBTQ+ people vulnerable to being denied the ability to make end-of-life decisions for their partners or have their identities respected.
The local culture and social acceptance within a community also played a major role. Even where anti-discrimination laws existed, a prevailing heteronormative culture could still lead to LGBTQ+ individuals feeling unwelcome or unsafe in end-of-life care settings. As one participant shared, “there’s a don’t ask, don’t tell kind of attitude” that forced them to remain invisible.
Inadequate resource allocation was another systems-level barrier. The review found that LGBTQ+-specific bereavement support, palliative care services, and culturally competent providers were often lacking. This left many members of the community feeling isolated and unsupported.
At the individual level, the most prominent barrier was the pervasive heteronormative assumptions and biases held by healthcare providers. Participants described experiences of providers avoiding discussions about sexual orientation and identity, misgendering transgender individuals, or outright refusing to acknowledge same-sex relationships. These microaggressions and overt acts of discrimination further eroded trust in the system.
The Lived Experience Gap
Another key finding was the lack of direct lived experience represented in the existing research. The review found that less than half of the studies captured the perspectives of LGBTQ+ individuals who had firsthand experience with end-of-life care, either as patients or caregivers.
Instead, much of the data came from healthcare providers recounting the experiences of LGBTQ+ clients, or LGBTQ+ individuals sharing the stories of others. While these accounts provided valuable insights, the researchers argue that the absence of direct patient/caregiver voices leaves critical gaps in understanding the true needs and barriers faced by this community.
Homogenizing the LGBTQ+ Experience
The tendency to treat the LGBTQ+ community as a monolithic group was also identified as a limitation in the existing literature. The review found that the majority of studies did not differentiate between the unique experiences of distinct subgroups, such as lesbian, gay, bisexual, transgender, and queer individuals.
This approach fails to acknowledge the intersectionality of identities and social determinants of health that shape the end-of-life care journey for LGBTQ+ adults. As the researchers note, “there is growing evidence that these sub-populations face diverse barriers and possess varied end-of-life care needs and experiences.”
Recommendations for Culturally Competent Care
The researchers propose several key recommendations to address the gaps and barriers identified in the review:
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Integrate LGBTQ+ Cultural Competence Training: Incorporating ongoing LGBTQ+ cultural competence training for healthcare providers, with a focus on recognizing and mitigating implicit biases, is crucial. This training must go beyond a “check-box” approach and demonstrate a genuine commitment to creating an inclusive environment.
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Elevate LGBTQ+ Voices in Program Development: Ensuring that LGBTQ+ individuals are active participants in the design and implementation of end-of-life care programs and services is essential. Their lived experiences should be at the core of shaping these offerings.
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Acknowledge Unique Subgroup Needs: Recognizing the diversity within the LGBTQ+ community and addressing the distinct needs of each subgroup is critical. An intersectional approach that considers the complexities of identity and social determinants is key to delivering truly inclusive care.
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Adopt an Integrative Ecological Framework: Combining Bronfenbrenner’s Ecological Model and Meyer’s Minority Stress Model provides a powerful lens for understanding how the multilayered systems and contexts shape the end-of-life experiences of LGBTQ+ adults. Applying this framework can inform more holistic, person-centered interventions.
As the population of older LGBTQ+ adults continues to grow, addressing the gaps and barriers in end-of-life care is a pressing concern. By elevating the voices of this community, providing culturally competent support, and acknowledging the diversity of experiences, healthcare providers and policymakers can work to ensure a more equitable and dignified end-of-life journey for all.
Recognizing the Vital Role of Homecare Workers
Homecare workers play a crucial role in supporting individuals at the end of life, yet they often face unique challenges and unmet needs themselves. A separate rapid review, also conducted by researchers at the University of Victoria, shed light on the experiences and training requirements of this essential workforce.
The review, which synthesized 19 studies involving 2,510 homecare workers (91% of whom were women), identified four key themes:
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Emotional Support: Homecare workers must navigate complex and distressing situations, managing their own emotions as well as those of their clients and clients’ families. They often feel isolated and unsupported in this process.
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Interaction with Other Professionals: Homecare workers report feeling undervalued and poorly understood by the broader healthcare team, leading to a sense of isolation and lack of collaboration.
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Training and Support Needs: Homecare workers require additional training and supervision in areas such as recognizing client deterioration, symptom management, and communication skills to provide high-quality end-of-life care.
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Recognizing Good Practice: While examples of effective end-of-life care models exist, data on their implementation and impact is limited, leaving homecare workers without a clear roadmap for success.
These findings underscore the essential, yet often overlooked, role of homecare workers in supporting individuals and families at the end of life. By addressing their needs for emotional support, professional integration, and targeted training, healthcare systems can empower this workforce to provide the compassionate, holistic care that is so desperately needed.
Conclusion: Elevating Voices, Fostering Inclusion
The challenges facing LGBTQ+ individuals and homecare workers in the end-of-life care landscape are complex and multifaceted. However, the rapid review insights provide a roadmap for meaningful change.
Elevating the voices of these communities, integrating cultural competence training, and acknowledging the diversity of experiences are all crucial steps towards creating a more equitable and supportive end-of-life care system. By empowering homecare workers and fostering inclusive practices, we can ensure that everyone, regardless of their identity or circumstances, can access the care and dignity they deserve.
To learn more about the Joint Action for Water’s advocacy efforts and community engagement initiatives, please visit https://jointactionforwater.org/. Together, we can work towards a future where no one is left behind, even in their final moments.
