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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.
General Terms | Definition | Example |
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Sexual Orientation (SO) | Pertains to a person’s romantic, emotional, and/or sexual attraction to certain gender(s) |
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Gender Identity (GI) |
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Sex assigned at birth | Pertains to data on the sex/gender assigned at birth based on the external genitalia |
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Intersex | An umbrella term for individuals whose bodies (as determined by chromosomes and/or anatomy) lie outside the strict binary sex of male and female |
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Gender Expression | Pertains to the external manifestation of one’s personality, appearance, and behavior that are culturally defined as masculine or feminine. |
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Sexual Practice/ Behavior | Refers to the broad spectrum of behaviors by which humans display their sexuality. |
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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.
The overlapping frameworks of minority stress and intersectionality can be used to better understand the physical and mental health outcomes affecting LGBTQ+ people. In comparison to cisgender heterosexual people, LGBTQ+ people experience higher rates of chronic conditions such as hypertension, smoking-related illnesses, arthritis, asthma, diabetes, obesity, and alcohol use that oftentimes lead to serious and potentially life-limiting diseases such as cancer. Stress-related stigma and discrimination may influence specific physiological mechanisms in the human body such as dysregulation of the hypothalamic-pituitary axis resulting in increased cortisol-related cardiovascular and endocrine diseases. The disproportionately adverse health outcomes may in part be driven by fear and mistrust resulting in delayed access to health care such as surveillance health screenings and inadequate knowledge of the appropriate types of health care needed. For instance, gay and bisexual men have been observed to have higher rates of cancer, HIV, and overall mortality. Women who identify as lesbian and bisexual also experience a greater prevalence of breast and gynecological cancers, obesity, and cardiovascular disease. Transgender people experience heightened rates of HIV and cancer. These disparities exist across the lifespan and are exacerbated when LGBTQ+ people develop life-limiting and serious illnesses. Thus they continue to face challenges in equitable access to resources and high-quality medical care including palliative, hospice, and end-of-life care.
Sexuality and intimacy are important aspects of the human experience, including for those living with serious illness, and are closely linked to self-esteem, mood, and quality of life. Serious illness can deeply impact sexual function. For example, certain cancers and their treatments may lead to anatomical changes, physical symptoms such as pain and fatigue, and psychological effects such as poor body image that can influence relationships and well-being. Expressions of intimacy for people with serious illness can extend beyond physical intercourse to include things such as proximity, hand holding, reminiscing, and giving compliments; however, with increased reliance on facility-based care, LGBTQ+ people, women who have sex with other women (WSW), and men who have sex with other men (MSM) living with serious illness may have concerns around privacy and the perceived impact that staff attitudes may have on the care they receive. Providers can support sexuality and intimacy for LGBTQ+ people living with serious illness by maintaining confidentiality and professionalism and remaining inclusive, nonjudgmental, and affirming in their encounters.
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