What Are the Palliative Care Needs of LGBTQ+ People?

Introduction and Scope of the Problem

Lesbian, Gay, Bisexual, Transgender, and Queer, commonly known as LGBTQ+, are terms used to describe sexual orientation and gender identity (SOGI). According to a 2017 Gallup survey, roughly 11 million Americans (4.5% of the U.S. population) identify as LGBTQ+. Furthermore, an estimated 1.5 million of these adults are over the age of 65, a number that is expected to double by 2030. Many LGBTQ+ people living with serious illness grew up at a time when their SOGI was condemned or forbidden by some religious groups, pathologized by the medical establishment, and in many places criminalized. Nearly two out of every three LGBTQ+ older adults report being victimized three or more times over the course of their lifetime on the basis of their identity. These lived experiences may impact the health of LGBTQ+ people and how they interact with the health care system. They may lack confidence that the medical system will address their needs and deliver care that is consistent their wishes. The 2011 Institute of Medicine (IOM) report summarized the state of the science of LGBTQ+ health, identifying research gaps and opportunities to address them. However, the document contained very few references to the palliative, hospice, and end-of-life care needs of this population. LGBTQ+ people remain vulnerable to health care disparities and discrimination across settings, including palliative, hospice, and end-of-life care. Acknowledging the diversity between and within each subgroup of these individuals, this chapter describes the unique palliative care needs of LGBTQ+ people, highlights their resilience, and recommends evidence-based strategies in caring for them during serious illness. Given the spectrum of terminologies used in the LGBTQ+ medical literature, Table 77.1 helps guide the reader by defining commonly used words pertaining to this population.

Conceptual Frameworks That Inform the Palliative Care Needs of LGBTQ+ People

An important step in providing palliative care to LGBTQ+ people is to understand the historical, social, and political factors that impact their experience. Much of the literature on the palliative, hospice, and end-of-life care considerations for this population has focused on the needs of older adults and patients with cancer and human immunodeficiency virus / acquired immunodeficiency syndrome (HIV/AIDS). Little is known about the needs of LGBTQ+ people with other types of serious illnesses. Given that the specialty of palliative care is grounded in the total person–caregiver unit, palliative care providers are uniquely positioned to recognize and understand the vulnerabilities of LGBTQ+ people with serious illnesses.

The practice of cultural humility is a useful lens in caring for LGBTQ+ people. This has been defined as a process in which individuals engage in self-reflection and self-critique related to cultural identity and awareness of different perspectives, with the primary goal of strengthening relationships with others. In contrast, cultural competency describes the knowledge and understanding of a person’s culture and adapting one’s approach to health care by incorporating cultural differences. Research shows that medical providers receive minimal cultural competency training to address the health care needs of LGBTQ+ people, The cultural competency framework has the limitation of implying that cultural aspects of health care are finite and can be taught and mastered in a single curriculum. Cultural humility can be conceptualized as longitudinal effort on the part of a practitioner that may be more adaptable and appropriately suited to medical practice.

Ilan Meyer’s Minority Stress Model describes a framework of excess stress brought on individuals of marginalized groups as a result of their race, ethnicity, religion, socioeconomic status, sexual orientation, and gender identity, among others. These specific stressors are considered distinct and additive to the general stressors of daily living. This model also posits that health care disparities in LGBTQ+ people do not necessarily reflect intrinsic, individual psychological issues but may instead be the result of experiences of prejudice and trauma. An example of minority stress is enacted stigma by an individual, groups, or society at large targeting LGBTQ+ people with conscious bias, microaggressions (e.g., more subtle acts of discrimination), verbal assaults, bullying, overt rejection, and physical abuse. This could lead to significant psychological trauma and poor physical health outcomes such as anxiety, depression, suicidal ideation, intimate partner violence, alcohol consumption, smoking, high-risk sexual behavior, and substance use.

Another framework is intersectionality that includes three core tenets: (1) cultural patterns of discrimination and inequities are interlocking and cannot be separated based on one aspect of a person’s identity; (2) interrelationships between identities exist in the context of social institutions and inherent power dynamics; and (3) identification of unique strengths and patterns of resilience through an intersectional lens can impact public health outcomes. A hypothetical example is that of an older Latinx transgender female who identifies as straight and whose way of living is influenced by financial constraints, nonreligious affiliation, and a walking disability, to name a few.

Palliative Care Needs and Considerations for Lgbtq+ People