Inequity in End-of-Life Care for LGBTQ people

In an article published by The Gerontologist, an Oxford Academic Journal, one couple’s experience with end-of-life care is examined, demonstrating the inequity in treatment due to their status as a married, same-sex couple. While Cathy and Esther were in the hospital for Cathy’s leukemia, they noticed that once they disclosed their relationship, and therefore sexual identity, their nurse visited less frequently, did not inquire about emotional needs, displayed an overtly negative disposition, and avoided eye contact with them. The judgement they perceived only served to exacerbate both of their anxieties, compounding the negative emotions often felt during such a vulnerable time.

Cathy and Esther eventually decided to withhold information about their relationship. When Cathy died, Ether was left to grieve alone, without a group or community that she felt would understand or accept her. Instead of as a spouse, Esther was treated as a close personal friend, which led to a sort of “disenfranchised grief, a type of grief that happens when a loss is not openly acknowledged, viewed as legitimate, or publicly mourned.”

Honesty and transparency between patient and caregiver is a crucial component in a successful, productive outcome, whatever that might be for each person. No patient should find themselves in a dynamic where they feel they must choose to be dishonest for fear of mistreatment. Individual biases and prejudices should not result in diminished care. As the article states, “Acknowledging the patient’s identity, significant relationships, and providing a nonjudgmental environment is a first step to opening the door to true person-centered care for LGBT patients.” 

Without a proper understanding of one’s background, a medical professional cannot provide the same level of care as they might with a more complete picture. This is especially true at the end of life, when there is often a much more complex and lengthy medical or contextual history to be taken into account, but there is not the same time left for trials or assumptions. A person’s sexual and gender identities are inextricably linked to their medical history. For example, many trans people undergo hormone therapy or certain surgeries; there is a higher rate of mental illness within the LGBTQ community; there are various medications that are prescribed primarily to queer folks, etc. Person-centered care cannot be achieved when the system renders the person invisible, either through failure to collect sexual orientation and gender identity information, or refusal to acknowledge their identity at all.

Medical care for LGBTQ persons has been widely documented to often be inferior or inadequate, if it is not denied outright. This is supported by the statistic cited in the article that “43% of respondents of a 2018 survey of 865 hospice professionals reported having directly observed discriminatory behavior toward LGBT patients.” This discrimination affects queer adults in regard to their physical, mental and sexual health. The disturbing finding that even at the end of life, queer elders do not receive sufficient or equal care is unacceptable. 

Compassion & Choices is dedicated to addressing these disparities in the end-of-life care of LGBTQ people. Another recent study underscores the importance of “establishing collaborations and partnerships with relevant leadership, program staff, and community stakeholders” in order to integrate end-of-life care in underserved communities. 

Compassion & Choices continues to partner with SAGE, the country’s largest and oldest organization dedicated to LGBT elders. We also provide resources tailored to the LGBTQ community.