(In)Equity in Aging: A Critique of Healthcare Access and Delivery Related to LGBT Elders and Opportunities for Reducing Disparities – Karey Kenst
The last century has seen a twelve-fold increase in the elder population in the United States, and as this population increases, a growing number of people age 65 and older are in need of services to maintain and promote health and well-being (1). Although there is an abundance of data related to older adults in general, there remains a dearth of information on one of the most vulnerable subsets of this population: lesbian, gay, bisexual, and transgender (LGBT) elders. Much of what we do know about LGBT seniors’ unique health care needs lacks a quantitative evidence base and is extrapolated from research with limited sample sizes (1). As a result, disparities persist with regard to access to and delivery of appropriate health care for this underserved and traditionally marginalized population.
Despite limited national data on LGBT populations in general and LGBT elders in particular, it is estimated that there will be between 2 million and 7 million LGBT elders in the United States by 2030 (1). LGBT elders commonly contend with ageism, homophobia, transphobia, and heterosexism. Because LGBT people represent a diversity of racial, ethnic, socioeconomic, gender, and other groups, the barriers to care they face are undoubtedly compounded by health disparities associated with other underserved groups to which they may belong (2). According to the National Gay and Lesbian Task Force, “[L]ifelong experiences of social and economic marginalization place [LGBT] elders at higher risk for isolation, poverty and homelessness than their heterosexual peers” (1). Much of the research on LGBT seniors’ health care has been undertaken by LGBT organizations, social work professionals, and gerontological researchers and indicates that LGBT elders are at increased risk for abuse, depression, and inadequate or inappropriate treatment by health professionals (1). Although the federal government’s Healthy People 2010 campaign failed to systematically research or track issues related to LGBT populations, it does acknowledge that LGBT people are at increased risk of a wide variety of physical and mental health-related vulnerabilities (2). LGBT elders face unequal access to appropriate health care due to a number of factors, including (though not limited to) the historical pathologization of homosexuals and transgender people by the medical establishment, widespread discrimination against sexual and gender minorities, lack of cultural sensitivity and professional competency among health care providers, denial of civil rights, lack of legal benefits and protections afforded to their heterosexual and non-transgender peers, and internalized homophobia and/or transphobia resulting from many of these factors (1, 3). A recent study of lesbian and gay male baby boomers revealed that less than half are strongly confident that health care professionals will treat them with dignity and respect, and 12% had no confidence at all that they would be treated with respect (4). It is also estimated that at least 39% of transgender people are harassed or discriminated against when seeking routine care (5). These factors lead many LGBT elders to withhold information about sexual orientation and/or gender identity that may affect the quality of their health care, to go back into “the closet” as they age, or to avoid seeking care altogether (6, 7). These disparities are reflected in the fact that adult sexual minority populations have significantly higher chronic disease risk factors than their heterosexual counterparts (8).
As the LGBT elder population grows, it is critical to address the issues of access and delivery of appropriate care for this population. However, the current healthcare system in the U.S. has failed to meet this need. This paper provides a critique of the health system’s approach to LGBT elder care, highlighting three ways in which the system fails to meet the needs of LGBT elders and exploring alternative methods for effectively reducing disparities in care.
Assumptions Underlying the Health Belief Model Perpetuate Health Disparities
The current healthcare system in the United States relies on individual motivation rather than proactively supporting people across the lifespan to obtain the preventive, curative, and other health services they need. Little emphasis is placed on understanding the barriers to seeking care that marginalized populations face. As a result, insufficient resources are mobilized for outreach and other measures to ensure that LGBT elders who need care actually receive it. In many ways, this system reflects the key tenets of the health belief model, one of the most pervasive models used in determining what motivates individual behavior and action with regard to health care (9). The health belief model presupposes that individuals make decisions about health-related factors on the basis of a rational cost benefit analysis, taking into account their susceptibility to a negative health outcome and the severity of that outcome (9, 10). Simply put, if LGBT elders perceive that they are in need of health care, they will seek it out. This view is among the most fundamental yet overlooked issues plaguing the healthcare system when it comes to LGBT elder care. The model assumes that peoples’ intentions are what drive behavior and that if people perceive their health risks to be high, they will take the necessary steps to reduce that risk. In the case of LGBT elder health care, the model fails to address external factors that likely influence health-related behaviors. Irwin M. Rosenstock himself, who is credited with developing the health belief model, states that, “[T]he potential value of the model would be greatly enhanced if…beliefs were placed within a broader theoretical framework that would account for responses to a wide variety of stimuli” (11). The current approach to health care may reach populations who experience and perceive less risk and fewer barriers to care but does an inadequate job of addressing issues related to access and appropriateness of care for underserved and/or marginalized populations. The approach ignores both historical and present-day discrimination against LGBT seniors that is often at the root of personal beliefs about accessing care in this population. Through its emphasis on rational decision-making, it ignores the complex array of determinants that influence individuals, including social, economic, and environmental factors that drive health behavior (10). This is a dangerous oversimplification of the real drivers of behavior among LGBT elders with regard to accessing health care services.
Whether consciously or not, the healthcare system in the United States reflects the values and assumptions that underlie the health belief model and other individual-level models of health behavior. A health belief model approach relies on individual agency and risk taking in accessing care, placing the burden of overcoming complex barriers to care on the individual rather than demanding more appropriate services and protections be built into the system as a whole. As a result, significant attitudinal and behavioral shifts among health care providers would be required in order to first recognize the problem of health disparities among LGBT elders and then seek ways to become more culturally competent in working with them. It is unreasonable to assume that this wide-spread shift will take place on a provider to provider basis, as much of the discrimination that keeps LGBT elders from accessing care lies with providers themselves.
In failing to recognize the multitude of contextual and cultural factors that contribute to behavior, the health belief model is insufficient for understanding health-related behaviors and barriers to care among LGBT elders. In her feminist critique of the health belief model, Thomas rightly highlights “the model’s inability to allow for the inclusion of the relationship between health status and historical, social, and political structures” (12). The health belief model falls short when it comes to understanding the choices that populations experiencing health inequities make with regard to accessing and using health care services. For older LGBT individuals, the risks associated with accessing care may be more salient drivers of behavior than perceived susceptibility or severity of a particular health concern.
The Power of Labeling is Overlooked by the Healthcare System
A key flaw of the healthcare system with regard to LGBT elders is that it systematically denies the opportunity to self-label as lesbian, gay, bisexual, transgender, or a range of other identities associated with sexual orientation and gender identity. In general terms, labeling theory posits that labels and stereotypes have the potential to influence how individuals behave (13). Labeling LGBT identity as deviant has had far-reaching consequences for the health of LGBT populations throughout history. In addition, mislabeling LGBT elders as heterosexual, not allowing them to self-label, or misunderstanding or invalidating the labels they use can have a profound negative impact on both physical and mental health (14, 15). Ignoring the salience of labeling for LGBT populations in any or all of these ways results in barriers to accessing and receiving appropriate care. Like many other institutions in the United Sates, the system of healthcare is gender- and heteronormative and does not pay due attention to the existence and differential needs of LGBT populations. Many of the systems and services provided are based on the assumption that patients fall within the heterosexual majority. For example, many of the health forms that patients are required to fill out do not ask appropriate questions regarding sexual orientation and gender identity but rather assume heterosexuality and a gender binary as the “natural” norm. Even in cases where appropriate questions are included on forms, health care providers may not acknowledge this information and may continue to make assumptions when working with patients. In the case of LGBT elders, these problems are compounded by ageist assumptions that older people are not sexual beings or that the salience of sexual identity decreases with age (1, 16). All of these factors contribute to the invisibility of LGBT seniors in the healthcare system (7). The negative impact of this cannot be overstated. When the importance of labeling is overlooked, LGBT elders are often forced to hide their sexual and/or gender identity from their provider(s), which can result in inappropriate care and/or increased levels of fear and anxiety regarding the patient-provider relationship (7). It may also cause LGBT elders who have been out for years to retreat back into the closet, while others still may refuse to seek needed care altogether. When LGBT elders are labeled by health care providers, this can also diminish their sense of self-efficacy and control over their own lives and the medical attention they receive. Finally, when deprived of the right to self-identify, an important part of LGBT elders’ identity – one that is inextricably tied to overall health and well-being – is denied and invalidated.
Inadequate Emphasis on Safety Furthers Health Inequities
Yet another flaw in the way that health care is provided for LGBT elders is that the hierarchy of needs is not adequately considered in relation to this population. Abraham Maslow identified five basic needs that humans seek to fulfill: physiological needs, safety, love, esteem, and self-actualization (17). The lower order needs must be reasonably satisfied before an individual recognizes and seeks to fulfill higher order needs. Chief among the lower order needs is safety. According to Maslow, if this need is not met, safety will be “a strong determinant not only of [a person’s] current world outlook, but also of [one’s] philosophy of the future. Practically everything looks less important than safety, (even sometimes the physiological needs…)” (17). A lack of actual and perceived safety in accessing health care may well explain the reluctance of many LGBT elders to disclose important information related to sexual orientation and/or gender identity, as well as reluctance to seek both short- and long-term care within the medical system as they age. Although elders be aware of the need for preventive and other services and desire to seek them out, they may fail to do so if they do not feel safe from negative judgment, discrimination, and physical or psychological harm.
In seeking to fulfill the need for safety, LGBT people have “formed communities that bridge their many differences. These communities have provided safe spaces, developed norms and values, and created institutions where LGBT identities and relationships can be acknowledged and respected” (18). Many LGBT elders prefer to rely on non-relatives, or “families of choice,” to help them meet their health care needs later in life. The National Gay and Lesbian Task Force states that, “LGBT elders report an almost universal fear and anxiety of care provision by strangers in assisted living and nursing care settings” (1). As long as the healthcare system fails to create safe spaces, structures, systems, and practices necessary for LGBT seniors to access care, their lower order need for safety will continue to be neglected, perpetuating mistrust of the medical system as a whole. And as long as LGBT elders are deprived of safety in their experiences with the health care system, they will be prevented from fully achieving the higher order needs that allow them to realize their full potential in the final stages of life.
These key failings of the current healthcare system create gaps in equal access to and delivery of healthcare for LGBT elders. These gaps present a unique opportunity for the medical and public health communities to affect systemic changes in the health care and quality of life of the aging LGBT population.
Create a Media Campaign Targeting Health Care Providers
As described above, the current healthcare system in the U.S. reflects the underlying assumptions of the health belief model. This model fails to take into account the sociocultural and other contextual factors that motivate health behavior among LGBT elders. It encourages health care professionals to continue providing care on a “business as usual” basis. Reframing and publicizing the issue of unequal access and delivery of care for LGBT elders could encourage providers to change the way they approach provision of health care services. Traditional public health approaches have relied on the assumption that increasing knowledge on a given issue will lead to subsequent changes in attitudes and behaviors. However, simply knowing that LGBT elders face inequalities in the healthcare system may not be enough to motivate providers to alter their attitudes and behaviors in treating this population, particularly when providers themselves are often the source of negative attitudes and stereotypes about LGBT people. Reframing the issue and drawing on theories and concepts that have proven to be effective in influencing social and behavioral changes may lead to more immediate improvements in providers’ work with LGBT seniors. Rather than attempt to shame health care professionals into providing better quality care for older LGBT people, we need to reframe the issue of LGBT elder care so that it captures the attention of providers and motivates them to engage with the issue.
Advertising theory can be employed in the creation of a media campaign that speaks more directly to the core values of health care providers. For example, instead of negative messages that emphasize the insufficiencies and discrimination surrounding LGBT elder care, advertisements that feature stirring images of older individuals may speak to providers’ desire and professional commitment to deliver the best possible care to each patient. Similarity can be invoked by depicting elders in a way that providers can relate to them, almost as if they were their own mother, father, grandmother, grandfather, etc. Employing similarity in this way can increase the credibility of the advertisement. It may also increase liking for the elders depicted, which in turn could reduce negative attitudes that providers may have toward LGBT people (19). Such advertisements can cause providers to relate to LGBT seniors as if they could be members of their own families and inspire them to strive for high standards of quality care for all patients. Finally, the media campaign should include images of doctors working successfully to provide culturally sensitive care to LGBT elders, as self-referencing would further strengthen provider’s perception that they, too, can provide competent care to a diversity of older individuals.
A media campaign like that described above aims to induce cognitive dissonance in providers, and this can be a powerful way of first changing behavior, even in the absence of immediate, more fundamental changes in attitude. For example, the campaign could influence a provider to more openly inquire about a patient’s sexual orientation or gender identity without making assumptions, thus creating a more welcoming environment for an LGBT elder to disclose important health information. Even if the provider’s personal attitude or opinion of LGBT people has not shifted, this small behavior change could have a positive impact on LGBT elders in the short term. Importantly, inducing cognitive dissonance has the potential to lead providers to adjust their attitudes and knowledge over time to better align with the new behaviors they have adopted.
Address Labeling and Safety Issues through Cultural Competency Training and Visibly Welcoming Healthcare Environments
Cultural competency training is needed for all health care professionals in order to address issues of labeling with regard to LGBT elders in health care settings and to raise awareness of the importance of creating safe spaces for LGBT adults to access care. It is critical for professionals to understand how making assumptions about sexual and/or gender identity, mislabeling LGBT elders, or denying LGBT seniors the opportunity to disclose information on their own terms or define their own familial ties can damage a patients’ sense of comfort, safety, and self-efficacy in accessing and receiving care (7). In order to promote safe environments, professionals must also be prepared to address homophobia and transphobia directed from one patient to another in settings such as assisted living and long-term care facilities, in addition to dealing with their own assumptions and biases about LGBT elders. Rarely, if ever, is this training provided to health care professionals or included as part of their formal and mandatory education. Administrators and providers need to be supported to deliver the highest quality care to all patients, and cultural competency training is a critical step toward meeting this need. By including such training as part of the educational and accreditation processes and by mandating ongoing education for administrators and providers, professionals will be better equipped to meet the continually evolving needs of this diverse population.
In addition to training, health care environments can be altered with an eye toward reducing inappropriate labeling and increasing safety for LGBT patients. Providers cannot assume that LGBT elders will know whether a particular health care setting is LGBT-friendly. Patients need visible evidence that they will be treated with respect and that their need for safety will not be compromised. Simple measures, such as targeting outreach to LGBT seniors, altering intake and assessment forms and electronic medical records to include open-ended questions about sexual orientation and gender identity, and displaying posters depicting LGBT seniors and their families of choice in health care settings can make a significant difference in demonstrating that services are inclusive (7).
Advocate for Policy Changes at Multiple Levels to Improve the Healthcare System for LGBT Elders
Policy changes are needed on a number of fronts in order to reduce health disparities among LGBT elders and create safe environments f0r accessing services. Ultimately, national and state level policies that afford LGBT seniors their civil rights and equal protection under the law will lead to the most wide-sweeping and fundamental changes in how LGBT elders access and use health care services. Currently, LGBT elders face numerous barriers that could be addressed by policy level changes. For example, LGBT couples are less likely to be eligible for the health care-related benefits afforded to couples that conform to traditional definitions of family. The Healthy People 2010 LGBT companion guide points out that “[w]ithout legal acknowledgement of the LGBT family unit, LGBT persons whose partners become medically incapacitated can be left out of medical decision-making, denied information on their partner’s condition, or even barred from seeing their partner. Since social and family support has been show to have a positive effect on health outcomes, denying that support is not in the best interest of the patient and creates a hardship for the partner” (2). Additionally, a “systemic bias in favor of heterosexuals” is inherent in many social benefit programs administered by the federal government, such as Medicare and Medicaid (1, 2, 7). The opportunities for policy reforms that would positively impact LGBT elders are wide-reaching, including: banning discrimination in accessing federal benefits on the basis of sexual orientation and gender identity, repealing the Defense of Marriage Act, granting LGBT partners the same rights as heterosexual couples, ensuring equal access to health insurance, and revising the Family and Medical Leave Act to include LGBT families of choice (20), to name just a few. By joining together to advocate for legislation that enhances LGBT rights with regard to health care, LGBT and public health advocates can significantly alter the landscape of the healthcare system in a way that reduces health disparities for this marginalized population. As a result, LGBT elders are likely to feel safer over time and to advocate for their own rights, knowing they have equal protection under the law. The bottom line is that policy reforms such as these would lead to improved health outcomes and quality of life for LGBT elders.
Policy change should also be supported at the institutional level. For example, public health and LGBT advocates should push for the development of minimum standards for LGBT elder care, with implementation support to health care facilities serving older adults. One way to approach this would be to support a number of institutions state-wide to adopt the minimum standards and for the state department of public health to implement a campaign that publicly recognizes institutions that are taking positive steps toward improving services for LGBT elders. This provides an incentive to institutions at the same time that it identifies LGBT-friendly institutions for elders and their families or caregivers. As more and more institutions adopt the standards, public health professionals can take advantage of the critical tipping point to advocate for state-wide policy mandating minimum standards of care for LGBT elders at institutions across the state. Fenway Community Health and the GLBT Health Access Aging Project serve as models for the provision of LGBT aging services, with experience in the domain of standards for effective care of LGBT seniors (21, 22). Administrators, providers, health care institutions, policy makers, and public health practitioners can look to these models for inspiration and practical guidance, and public health practitioners nationwide should seek to expand and build on these and other similar models.
As evidenced by the interventions suggested above, a multi-level approach is needed to affect large-scale, sustainable changes in LGBT elders’ access to culturally appropriate care. The social ecological model provides a useful framework for assessing barriers to care and designing multi-level interventions, as it takes into account the interrelated nature of multiple contextual forces influencing both individual and collective behavior (23). This model encourages health care and public health professionals to assess the issue and consider interventions at individual, interpersonal, community, institutional, and public policy levels in order to identify “high-impact leverage points” for change (24). Furthermore, this model is grounded in a “contextually oriented view of human health and well-being,” recognizing that “healthfulness is a multifaceted phenomenon encompassing physical health, emotional well-being, and social cohesion” (25). This model encourages system-wide assessment and changes and has the potential to result in more sustainable outcomes than those that target only individual behavior changes (23). The interventions suggested above to improve access and delivery of health care for LGBT elders span the multiple levels of the social ecological model, from trainings to promote individual behavior change among providers to organizational and public policies that lay the foundation for more equitable treatment of LGBT seniors both now and in the decades to come. By considering the multiple interventions possible and using the social ecological model to determine strategic, multi-level approaches to reducing health disparities, medical and public health practitioners can help shape health care settings into welcoming environments that support LGBT elders to age with equity and dignity.
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