Whenever I see new health care providers, I have to deal with invisibility. My life is invisible to them. I constantly have to decide if it's safe to come out to new providers. I wish that my life was reflected at the doctor's office or the clinics where I receive health care, in their questions and forms. I wish I didn't have to decide to disclose my sexual orientation and the context in which I live my life. I wish I didn't have to explain about my family of choice. Straight people don't have to do that. Why do I?
—37-year-old lesbian patient
♦ Social workers working with lesbian, gay, bisexual, and transgender (LGBT) patients need to understand both the patient's family of origin and family of choice and their respective relationships and patterns of communication with each other.
♦ The psychosocial needs of LGBT patients and their caregivers in a palliative care setting may include issues of disclosure, privacy, and disenfranchised grief.
♦ There are unique legal and financial considerations of LGBT patients that commonly arise in a palliative care setting.
♦ LGBT individuals have higher risks of certain diseases, stress-related mental health problems, and substance abuse.
♦ Health care and personal assistance services are more complex for persons who are transgender, and finding culturally sensitive health care providers is particularly difficult.
Social workers have the aptitude, skills, and compassion to address the unique challenges presented by lesbian, gay, bisexual, and transgender (LGBT) patients in a palliative care setting. There exists a high probability of working with LGBT individuals in a palliative care setting. An attitude survey of lesbian and gay adults related to end of life reported that a majority (86%) preferred palliative care and advance care planning as special interests (Stein & Bonuck, 2001). While the entire interdisciplinary team must be sensitive to the needs of this patient population, the social worker is especially skilled in identifying and intervening with issues of disclosure, communication, family composition, finances, and legal concerns that are endemic to LGBT patients and their caregivers.
LGBT individuals have the same basic health needs as the general population, but they experience health disparities because of continuing discrimination and lack of knowledge related to sexual orientation or gender identity (Gay and Lesbian Medical Association, 2006). No consideration of LGBT health can overlook the experiences of stigma and prejudice that impact health and the ability of health care professionals to provide comprehensive palliative care services.
LGBT Health Concerns
Like the general population in the United States, LGBT individuals and families are quite diverse in terms of age, education, income, cultural background, and ethnic or racial identity. However, there are important issues particular to LGBT populations that can negatively affect access to appropriate palliative care services. There are gaps in health care services and systemic biases in employment, health care, health insurance, and public entitlements for LGBT persons. There is a lack of knowledge about LGBT health among health care providers. Transgender care is not taught in U.S. medical schools (Gay and Lesbian Medical Association, 2006). Although much has been written about HIV/AIDS and its impact on the LGBT communities in particular, little research has addressed other LGBT health concerns (Boehmer, 2002). LGBT individuals often face financial, personal, and cultural barriers when attempting to access health care. Despite numerous disparities, many medical providers are not aware of specific health issues impacting LGBT individuals or are not skilled in making their practices welcoming and inclusive of LGBT patients (Gay and Lesbian Medical Association, 2006).
In addition to the prevalence of diseases that affect all Americans (Heron et al., 2009), LGBT people as a whole have a higher risk for certain diseases. Evidence suggests that the rates of tobacco use among LGBT men and women may exceed those of the general population, ultimately leading to increased rates of lung disorders and smoking-related diseases (Engels et al., 2008). In addition, LGBT individuals are at increased risk for certain forms of cancers, including cervical and breast cancer, Hodgkin lymphoma, non-Hodgkin lymphoma, Kaposi sarcoma, and anal, lung, and liver cancers due to a higher prevalence of smoking, being overweight, inadequate risk assessment, health care screenings, and early detection (Engels et al., 2008). Individuals with chronic diseases such as these are the very patients who can benefit from palliative care interventions.
LGBT individuals have increased risk of stress-related mental health problems and substance abuse (Harcourt, 2006). LGBT adults and youth are more likely to avoid routine health care due to discomfort of coming out to health care providers (Mayer et al., 2008; Meckler, Elliott, Kanouse, Beals, & Schuster, 2006). They may withhold personal information about sexual orientation, gender identity or expression, sexual practices, and behavioral risks from health care providers due to fear of discrimination. Given these multiple factors, it is apparent that social workers can play a pivotal and critical role in education about and access to palliative care services and interventions. Furthermore, coping with stress has led to higher rates of alcohol and drug dependence among lesbians and gay men, and reports suggest that LGBT individuals are more likely to attempt suicide than their non-LGBT peers (Harcourt, 2006; Paul et al., 2002). These ineffective coping behaviors, coupled with a chronic illness, illustrate the importance of early social work intervention in the palliative care setting.
Transgender is an umbrella term for people whose gender identity and/or gender expression differs from the sex they were assigned at birth (Gay and Lesbian Alliance Against Defamation [GLAAD], 2007). Transgender people may or may not decide to alter their bodies hormonally and/or surgically. Transgender persons face many unique challenges in life, including stigma, discrimination, harassment, and violence. Finding culturally sensitive health care providers is particularly difficult. Health care and personal assistance services are more complex for persons who are transgender (Gay and Lesbian Medical Association, 2006). Apparent mismatch between genital anatomy and gender of presentation can result in difficulty in obtaining medical services, practical nursing care, or even appropriate funeral arrangements. Persons who undertake gender transition during mid to late life are more likely than their younger peers to experience difficulties related to physical health status, and transgender elders as a group are particularly “invisible” (Witten, 2002). Social workers and case managers can best assist transgender clients by providing information about the importance of routine health care and preventive services, arranging referrals to providers who are empathic and supportive to members of the transgender community, and educating medical, nursing, and other colleagues involved in clients' (palliative) care (Witten, 2002).
Myths and misconceptions abound: that transgender people are confused or really gay, that being transgender is a choice or something that can be “cured,” or that all transgender people have surgery (Human Rights Campaign, 2005). Avoiding offensive and problematic terms like “lifestyle,” “sex change operation,” “transvestite,” and “transgenders/transgendered” (GLAAD, 2007) can provide positive communication and create a welcoming environment. Transgender individuals should be identified with the pronoun that corresponds with the gender with which they identify. It is appropriate to respectfully ask their name and what pronoun they prefer that you use.
Family of Origin and Family of Choice
Jennifer is sitting beside Lucy's hospital bed on the oncology unit. Both women are in their mid-thirties and are visibly exhausted with this now third hospitalization in just the past month. While Lucy is finally resting, Jennifer is hoping to be able to get an update from the health care team on the status of Lucy's cancer and the next steps in the care plan. An unfamiliar admitting nurse walks in and asks Jennifer, “Are you her family?”
Such a routine question can be emotionally charged for Jennifer and Lucy as a lesbian couple. Jennifer indeed sees herself as Lucy's “family,” but in a state that does not recognize same-sex unions, Jennifer is Lucy's “family of choice,” distinguished from the law's view of what constitutes a “family of origin” (Hash, 2006). A health care provider may inadvertently inform the partner that she is indeed not the “official next-of-kin,” setting up a barrier to the partner's support, invalidating the authenticity of the relationship, and negating the very real existence of the “dual family concept,” which recognizes both the “family of choice” and the “family of origin” (Hash, 2006). In palliative care, where support networks provide essential resources to patients and their caregivers, it is imperative that the interdisciplinary team understand the composition of a patient's network. Thus, being aware of both types of families for LGBT individuals can be extremely beneficial in working together to create the optimal palliative care plan. It is important that the team not assume a lack of support from the family of origin (Hash, 2006), but rather, be aware of the existence of and then follow up with an assessment of the level of acceptance, communication, and support that is (or is not) available between the families. As importantly, however, a social worker must extend his or her assessment beyond the families to the health care teams. This is essential because health care professionals may or may not be supportive of the relationship between patient and partner, as evidenced in research with LGBT patients in a medical setting that indicates “conflict is much more likely between the family and the medical team than among family members” (Werth, 2007, p. 853). In fact, it has been reported while only up to 24% of LGBT patients have internal family conflicts, almost half (40%–48%) endure conflicts with the health care team (Werth, 2007).
However, it is imperative that the LGBT patient and his or her partner disclose the nature of their relationship (commonly referred to as “coming out”) only if they desire to do so. This can present a challenging situation for a social worker, as well as the rest of the team, in trying to complete a comprehensive assessment and subsequently develop a care plan. Nevertheless, as one study highlights, “disclosing one's sexual orientation is a phenomenon that is unique to LGB[T] people. Heterosexual populations need not worry about disclosure, for heterosexuality is almost inevitably assumed” (Neville & Henrickson, 2006, p. 409). Such a presumption of a patient's sexual orientation among health care professionals and society in general is referred to as “heteronormativity” and “describes the powerful heterosexual structure and normative principle [referring] to the assumption that heterosexuality is a universal norm, i.e., that heterosexuality is the only sexuality of individuals and society” (Rondahl, Innala, & Carlsson, 2006, p. 374). Such heteronormativity is “communicated in waiting rooms, in patient documents and when registering for admission” (Rondahl, Innala, & Carlsson, 2006, p. 373).
Surrounded by such information, not counterbalanced by LGBT-friendly materials, many LGBT patients may not feel “culturally safe” (Neville & Henrickson, 2006) in disclosing their primary relationship and thus may not speak candidly about it. One intervention to assist in providing a more culturally safe environment is the use of the Gay Affirmative Practice Scale (Crisp, 2006) as a measure of assessing cultural sensitivity with gay and lesbian clients. The scale is designed to assess practitioners' beliefs and behaviors in practice with gay and lesbian individuals and help health and human services staff evaluate the policies and procedures of their organization (Hash & Netting, 2007).
Palliative care practitioners can further promote an atmosphere of acceptance by using more neutral terms that allow for the patient and caregiver to disclose the nature of their relationship in a way that is most comfortable to them. Participants in Neville's (2006) study suggested specific questions to ask that can allow the team to retrieve the appropriate information and give permission for the LGBT patient to disclose if he or she desires. Examples of such questions are, “Who lives in your household? Are you in a relationship with someone you do not live with? Who is most likely to visit with you while you are in [the] hospital?”
Additionally, Rondahl, Innala, and Carlsson (2006) point out, if a patient or his or her caregiver is open about their relationship, further questions to provide more specific information should be asked such as, “How open are you? Do you have the support of friends and family? Does your partner communicate with your parents and siblings?” And, most important, the team should ask what the patient wants the staff to call his or her partner and how to document it within the medical record (Rondahl et al., 2006; Smolinski & Colón, 2006). Such demonstrations of sensitivity and inclusion will allow the couple the freedom to be more involved in the care plan. Supportive professionals were described as those who “bent the rules and treated partners as immediate family as far as policies and decision-making were concerned” (Hash, 2006, p. 133). Finally, professionals should be cognizant of LGBT resources in the community, make them visible in waiting areas and other resource locations, and direct patients to them.
Clinical Interventions, Issues of Intimacy, and Disenfranchised Grief
While it may be challenging for LGBT patients to disclose their sexual orientation to the palliative care team, the clinical benefits to them and their partners can be very rewarding. Trusting the team with such information allows interventions to be tailored appropriately. For example, in suggesting palliative interventions such as massage to alleviate pain or to enhance sexual intimacy to reduce isolation, the social worker can be much more effective teaching skills to the partners together if he or she is aware of their relationship. Furthermore, as “sexuality is about who we are and how we express that aspect of ourselves to the outside world” (Redelman, 2008, p. 367), creating an environment that encourages a patient to fully express himself or herself informs a comprehensive and authentic palliative plan of care that includes supportive listening, clinical interventions, and directed community resources. Although health care professionals agree that sexuality is an important issue for patients in their overall care plan, they recognize that it is inadequately addressed in the palliative care setting (Redelman, 2008). Not only does the health care system seem insensitive to the privacy required for intimacy, but even the individual practitioner can be uncomfortable and inadequate in addressing this need (Cagle & Bolte, 2009; Redelman, 2008). The failure to address sexuality in the palliative care setting, coupled with the denial of who shares intimate relationships, can impact the LGBT couple's trust within the system and prevent disclosure of relevant details that would help the team to provide comprehensive palliative care that enhances the quality of life along the continuum of illness for both patient and partner. (For more information, see Chapter 24)
Disenfranchised grief may be experienced by LGBT individuals during the course of the illness and at the end of life. Defined as isolated grieving, as it fails to be acknowledged or recognized because the relationship is not validated, disenfranchised grief can complicate the mourning process (Doka, 1989). The hallmark of palliative care is proactive alleviation of symptoms and suffering as opposed to reactive interventions. As Redelman (2008) observes, “If touching and hugging cannot be open, if true sadness and grief cannot be displayed, then extra pain is suffered” (p. 369). Disenfranchised grief may take many forms of isolation for the LGBT patient and his or her partner. From the time of diagnosis of a critical illness when patients (and their partners) feel the immediate “loss” of life the way it was before the illness, neither patient nor partner can be supported as a couple if the relationship is not known. Not being able to express one's authentic self to the team is an unnecessary loss that can engender an even more profound sense of isolation. Furthermore, during the course of treatment, clinical interventions are focused differently if the nature of the relationship is known and the partner more fully participates. Otherwise a persistent sense of sadness and isolation can permeate the relationship for the couple.
When Lucy is experiencing pain and could benefit from some relaxation, distraction, or massage, the social worker who is aware that Jennifer is her partner may discuss using these techniques within the context of an intimate relationship rather than a friendship. Upon Lucy's death, if the relationship has not been acknowledged, Jennifer may be excluded from being mentioned in obituaries, participating in planning the funeral or memorial service, or being supported by the larger community as having experienced the death of a life partner.
Using excellent assessment and supportive counseling skills, the social worker can identify those at risk for complicated mourning and work with the couple, the extended family, and support network in the palliative care setting to anticipate and mitigate such distressing outcomes (Smolinski & Colón, 2006).
Financial and Legal Considerations
When serious illness occurs and a palliative care team is added to the care of the patient, the assessment may include inquiries about financial and legal affairs. One of the key roles of the palliative social worker is to guide patients and their caregivers to relevant information, resources, and community supports, including those focused on financial and legal issues. Common examples include assistance with family and medical leave requests, disability paperwork, insurance issues, wills, and advance directives. Many times, the threat of serious illness becomes the catalyst which motivates individuals to begin to address such matters for the first time in their lives. This situation is especially true when working with LGBT patients and their caregivers:
Research has shown that the people who are most likely to need legal protection—men and women in same-sex partnerships who have not disclosed their relationship to their family—are less likely to have engaged in advance care planning, which is obviously problematic from both psychological and legal perspectives. (Werth, 2007, p. 854)
While most social workers in palliative care are cognizant of these common financial concerns, many are not aware of how they can uniquely affect LGBT individuals. For example, financial protections that are afforded to legal spouses are not granted to same-sex partners. These include eligibility for Social Security benefits and legal rights to shared properties. Older LGBT people in same-sex relationships are at high risk of economic devastation due to an absence of Medicaid spend-down protections afforded to legal partners. Medicaid is a state-administered medical assistance program for low-income people. Individuals can qualify for Medicaid if they “spend-down” their income by paying their medical bills and subsequently meet the income requirement set by their state Medicaid eligibility criteria. This process of subtracting those medical bills from an individual's income is called a Medicaid “spend-down” (Center for Medicaid and Medicare Services, 2009). Compared to heterosexual couples, LGBT couples are at a disadvantage in computing the spend-down amount and what assets get protected for the “community spouse,” that is, the spouse that is still living in the community if the patient enters a nursing home. Many same-sex couples (all those living in the majority of states that do not recognize same-sex marriage) cannot qualify as the “community spouse” and retain some of the household assets, family home, and family car as a heterosexual spouse could while continuing to live in the community. Furthermore, many LGBT individuals are not eligible for other types of medical insurance because many insurance companies and employers do not provide for domestic partnership benefits (Human Rights Campaign (2009). In fact, in 1997 and again in 2004, the U.S. General Accounting Office issued a report identifying over 1000 benefits, rights, and privileges that are contingent on marital status and therefore not available to unmarried same-sex couples. Additionally, despite the legality of same-sex marriage in a handful of states, the Defense of Marriage Act still denies federal benefits to LBGT couples whose unions have been legally sanctioned at the state level (U.S. General Accounting Office, 2004).
LGBT patients and caregivers themselves may not be aware of the benefits to which they may or may not be entitled and simply assume that certain benefits are unavailable to them. This can be especially true if they have never had a discussion with a knowledgeable lawyer, financial planner, or tax consultant about how illness and death may impact their partner's financial situation. For example, in Jennifer and Lucy's case, Jennifer may not be considering the very real fact that her employer may not automatically grant her up to 12 weeks under the Family Medical Leave Act (FMLA) to care for Lucy.
A gay couple will pay significantly more over their lifetimes for extra costs related to health care, legal affairs, and other issues; in a worst-case scenario, it could be as much as $467,000 (Bernard & Lieber, 2009). In calculating this dollar amount, the authors created a same-sex couple whose real-life counterpart was a heterosexual couple. The authors chose three states with the largest LGBT populations (California, New York, and Florida) and analyzed annual gross incomes and various cost of living expenses to determine a hypothetical picture. The biggest expenses that same-sex couples faced were health care costs, payment of estate taxes, and inability to transfer any Social Security benefits to the healthy partner.
The palliative social worker may need to be very proactive in probing about financial status and concerns with LGBT couples to determine, for example, whether an employer is progressive and does extend FMLA benefits to all employees regardless of legal relationship status. It is imperative that social workers do not err in giving misinformation about common financial benefits that may not be available to the LGBT family. A thorough assessment is the social worker's best intervention to begin addressing financial concerns and limitations that may complicate the palliative care plan for an LGBT couple.
When provided early, palliative care allows the time and advance care planning to utilize the health care system, community resources, and personal relationships to maximize an individual's quality of life and health status for the remainder of his or her illness. Therefore, it is a prime opportunity, especially at the beginning of the assessment process, to identify and address the legal aspects of care. Lack of legal relationship recognition is harmful for women in same-sex relationships and affects both direct and indirect health care issues (American College of Obstetricians and Gynecologists, 2009). Although lesbian partners may have legal documents in place, discrimination still occurs. For example, Jennifer may be prevented from seeing Lucy in the hospital or may not be able to give consent for medical care. Social work staff needs to assess the environment of the health care setting because even well-executed documents may not compensate for homophobia or insensitivity among the health care providers. The social worker can be active in ensuring continuous quality care in a supportive and inclusive environment for all patients, including those in LGBT relationships, by helping staff create awareness and eliminate discriminatory behaviors.
Palliative social workers are all too familiar with the shortcomings of inadequate advance directives or living wills. This can become increasingly stressful in the case of LGBT patients because default legal protections such as “next of kin” or “family visitation” do not automatically apply. However, extensive advance care planning can be a useful tool in securing the wishes and treatment preferences of patients prior to subsequent crisis points in their plan of care. This is especially true in LGBT families because legal documents such as a power of attorney for health care may be the only way a partner is able to make decisions on behalf of the patient. For example, Jennifer may only be allowed to make treatment decisions for Lucy if a durable power of attorney was duly executed while Lucy had capacity to make such a choice. Unlike married couples where the law commonly allows for the automatic right of the spouse to become a patient's decision maker, LGBT couples are not afforded this privilege. Therefore, a social worker in a palliative care setting needs to be sure to discuss such legal ramifications with the patient and family to avoid unnecessary heartache and disruption if the family of origin is not supportive of the relationship. However, if the opportunity was not available, and social workers find themselves in a situation where an LGBT patient has not executed an advance directive, there is still hope that the legal system will support the couple's relationship.
Such was the case with Sharon Kowalski, a lesbian who ultimately was reunited with her partner as her caregiver after 18 years of a prolonged legal battle. Sharon Kowalski and her partner Karen Thompson had lived together in Minnesota for 4 years and had had a commitment ceremony. In 1983, a drunk driver hit the car Kowalski was driving. Her nephew was injured, her niece was killed, and Kowalski was left comatose and then severely disabled by a head injury. When Thompson informed Kowalski's family that she and Kowalski had been lovers, they reacted harshly. In 1985, Kowalski's father acquired legal guardianship without a court hearing, moved Kowalski to a skilled nursing facility 200 miles from her home, and left orders forbidding Thompson from seeing her partner. While there may be legal barriers that could impede these actions today, the prejudices that motivated them still exist.
Although Kowalski continually typed messages (the only way she could communicate after many years of rehab) saying she wished to live with Thompson, her parents and the court considered her incompetent to decide her own future. Thompson waged a long, expensive battle to bring Kowalski home. In September 1988, Kowalski was tested for competency and the court found that she was capable of understanding and communicating her wishes. Thompson was allowed to visit her partner for two weekends each month. The courts, however, continued attempts to award guardianship to a “neutral third party.” In 1991, the courts determined that Kowalski had stated a clear preference for Thompson to be her guardian; Kowalski and Thompson won their case and the court allowed Thompson to bring Kowalski home (Charles, 2003). The case established Kowalski's lesbian partner as her legal guardian and highlighted the importance of durable power of attorney for same-sex couples wishing to name each other guardian. This case set a legal precedent and was seen as a victory for the gay rights movement.
Given the lack of routine legal protections for LGBT couples and families, advance directive documents (e.g., will, living wills, health care proxy, and financial power of attorney) are particularly important. However, same-sex couples cannot be sure that their health care decisions will be respected or that naming a partner as a health care proxy will ensure that their wishes will be followed. Unfortunately, while state laws give spouses in heterosexual relationships decision-making authority many states do not afford gay couples the same authority. LGBT individuals, therefore, must put their legal affairs in order as best they can to cover aspects of care already assumed and protected for heterosexual couples under state law. Such matters should at least consist of legally designating the following:
• A partner or some other person who is not a legal relative is authorized to make medical and financial decisions for an LGBT individual who is not able to speak for himself or herself.
• A same-sex partner is authorized to make hospital visits and be given medical information regarding an LGBT individual.
• A same-sex partner can be legally entrusted to raise minor children.
• A same-sex partner can be authorized to make medical, educational, and financial decisions for minor children.
More and more emphasis has been placed on ensuring that these legal protections are in place, yet LGBT families may still be reluctant to complete these documents. Although the majority of the 1000 lesbian, gay, bisexual, and transgender respondents aged 50–61 who were surveyed in 2006 had begun the process of advance planning, there were still those who had not completed or executed any formal documents (MetLife Mature Market Institute, Lesbian and Gay Aging Issues Network of the American Society on Aging, & Zogby International, 2006) While only about 15%–25% of all American adults have executed an advance directive, married heterosexual individuals have many more legal protections in place as secondary support that are not universally available to LGBT partners (Salmond & David, 2005). As noted by Hash and Netting (2007), “Because they are not afforded many of the protections that come with legal marriage, gay and lesbian couples cannot be confident that their plans and wishes will be respected” (p. 73).
Hospitals and other palliative care settings do not always recognize same-sex partners as family because of homophobia, inadequate staff training, or other policy barriers. LGBT patients and families often encounter less than optimal health care and confront financial and legal factors that can affect access and treatment to palliative care. They may experience a number of challenges, including stigma and discrimination, that exacerbate suffering and impact their ability to navigate a complicated health system successfully. A domestic partnership registration, civil union, or same-sex marriage in states that recognize them still does not guarantee that same-sex couples will be treated as family. These practical and psychosocial challenges provide palliative social workers ongoing opportunities to tailor interventions specific to the LGBT population and promote care that is inclusive and sensitive. Changing local hospital policies, educating the palliative care team and other health care providers, and advocating for LGBT families who are discriminated against are all part of the compassion and skills that a palliative social worker can provide. Palliative social workers are in key positions to affect LGBT patients' and families' experiences in health care and are well positioned to impact LGBT-supportive practices across the health care system.
• Distribute the Gay Affirmative Practice (GAP) Scale in your setting to provide a means for practitioner self-assessment. The palliative care team can use it as a guide for practice evaluation, their commitment to cultural sensitivity and humility, and a tool to develop sound policies and procedures that will contribute to the provision of excellent and appropriate services that are inclusive of LGBT clients.
• Review and revise intake forms, health history forms, and other documents to reflect more inclusive choices regarding LGBT patients and their families, such as using the terms “partner” instead of “husband or wife” and “relationship status” instead of “marital status.” Create a more welcoming environment by displaying LGBT-related media (magazines, newsletters) and LGBT symbols in waiting areas, patient libraries, and patient care units. Display brochures or flyers about LGBT health topics or concerns.
• Update the palliative care resource binder or database in your office or clinic by including local LGBT resources. If no resources are local, evaluate national online and telephone resources. Reach out to LGBT-friendly services (e.g., attorneys, financial planners, accountants, clinical social workers/psychotherapists/counselors, health care providers, community organizations, businesses) so that you will be ready to provide appropriate information and referrals to your LGBT clients.
• Plan and conduct an LGBT sensitivity training for your palliative care team. Include content on sexual orientation and gender identity, consider LGBT health issues, and define commonly used LGBT terms and inclusive language. Describe barriers faced by LGBT individuals and families when accessing the health care system. Review how to document appropriately and how to maintain privacy and confidentiality. List ways to help your staff and services become more culturally sensitive.
The Gay Affirmative Practice (GAP): http://sites.google.com/site/ccrisp002/gayaffirmativepracticescale
A two-dimensional, 30-item scale developed to assess practitioners' beliefs and behaviors when working with gay and lesbian clients. If you are interested in additional information about the GAP Scale and/or would like to use it in a study you are conducting, please contact the author for additional information. The full article is available publically at http://www.safeguards.org/wordpress/wp-content/uploads/GAP%20Article.pdf
Gay and Lesbian Alliance Against Defamation Media Reference Guide, 7th Edition: http://www.glaad.org/Document.Doc?id=25
The Gay and Lesbian Alliance Against Defamation (GLAAD) promotes fair, accurate, and inclusive news media coverage and expanding public awareness and understanding of LGBT lives. It provides a media guide to help meet the informational and educational needs of reporters, writers, editors, and others.
Gay and Lesbian Medical Association: http://www.glma.org
Works to maximize the quality of health services for lesbian, gay, bisexual, and transgender people and to foster a professional climate in which their diverse members can reach their full potential.
Healthy People 2010 Companion Document for Lesbian, Gay, Bisexual, and Transgender (LGBT) Health: http://www.lgbthealth.net/downloads/hp2010doc.pdf
A massive collaborative effort coordinated by the Gay and Lesbian Medical Association, with involvement of dozens of LGBT health experts and the recently formed National Coalition for LGBT Health, has yielded the first-ever comprehensive document on the state of LGBT health.
Human Rights Campaign: http://www.hrc.org
A bipartisan organization that works to advance equality based on sexual orientation and gender expression and identity, to ensure that gay, lesbian, bisexual, and transgender Americans can be open, honest, safe, and healthy at home, at work, and in the community.Find this resource:
The Journal of Gay and Lesbian Social Services: http://www.informaworld.com/smpp/title~content=t792304012~db=all
Dedicated to the development of knowledge that meets the practical needs of lesbian, gay, bisexual, and transgender people in their social context and provides empirical knowledge and conceptual information related to sexual minorities and their social environment.
LGBT Healthy Families Initiative: http://www.lgbthealthinitiative.com
Created to help promote an awareness of family health history for LGBT families and help them understand how health, family history, health beliefs, healthy living, and genetic background are an important part of future health.
Mautner Project: the National Lesbian Health Organization: http://www.mautnerproject.org/
Committed to improving the health of women who partner with women, including lesbian, bisexual, and transgender individuals, through direct and support service, education, and advocacy.
The National Coalition for Lesbian, Gay, Bisexual and Transgender Health: http://www.lgbthealth.net/
Committed to improving the health and well-being of lesbian, gay, bisexual, and transgender individuals and communities through public education, coalition building, and advocacy that focus on research, policy, education, and training.
Tools for Protecting Your Health Care Wishes—Lambda Legal: http://data.lambdalegal.org/publications/downloads/ttp_your-health-care-wishes.pdf
Provides a guide to help create the right documents that will help make sure wishes are respected.
World Professional Association for Transgender Health: http://www.wpath.org
An international multidisciplinary professional association that works to promote evidence-based care, education, research, advocacy, public policy, and respect in transgender health.
Appleby, G. A., & Anastas, J. W. (Eds.). (1998). Not just a passing phase: Social work with gay, lesbian, and bisexual People. New York, NY: Columbia University Press.Find this resource:
Clifford, D., Hertz, F., & Doskow, E. (2007). A legal guide for lesbian and gay couples. Berkeley, CA: Nolo Press.Find this resource:
Laird, J., & Green, R. J. (Eds.) (1996). Lesbians and gays in couples and families: A handbook for therapists. San Francisco, CA: Jossey-Bass Publishers.Find this resource:
Anderson, J., Coolidge, M., & Heche, A. (2000). If These Walls Could Talk 2 [Motion picture]. United States: HBO Home VideoFind this resource:
A portrait of three women from three generations (all who occupied the same house at various times) tells the stories of women who love women. The first story, taking place in 1961, shows a woman “widowed” when her partner of 50 years dies suddenly. The 1972 story shows a young woman who finds dealing with the sexual politics of the gay community increasingly more complex when she falls in love with a boyish woman. The most modern piece, taking place in 2000, portrays a contemporary lesbian couple determined to have a baby.
Anderson, J. (2003). Normal [Motion picture]. United States: HBO Home Entertainment.Find this resource:
The relationship of a devoted couple in rural Illinois is deeply challenged when the husband confesses to his wife that he's a woman trapped in a man's body and he must face their children, friends, and coworkers with the new way of life he has planned.
Southern Comfort is a documentary that chronicles the last year of the life of Robert Eads, a female-to-male transgender person who succumbs to ovarian cancer. The film shows Robert and his adopted transgender family living in rural Georgia. The film's title comes from an annual gathering that Robert describes as “the cotillion of the trans community, the coming-out party—an event part convention, part high school prom.”
American College of Obstetricians and Gynecologists. (2009). Legal status: Health impact for lesbian couples. Obstetrics and Gynecology, 113(2), 469–472.Find this resource:
Bernard, T. S., & Lieber, R. (2009, October 2). The high price of being a gay couple. New York Times. Retrieved from http://www.nytimes.com/2009/10/03/your-money/03money.html
Boehmer, U. (2002). Twenty years of public health research: Inclusion of lesbian, gay, bisexual, and transgender populations. American Journal of Public Health, 92(7), 1125–1130.Find this resource:
Cagle, J. G., & Bolte, S. (2009). Sexuality and life-threatening illness: Implications for social work and palliative care. Health and Social Work, 34(3), 223–233.Find this resource:
Center for Medicaid and Medicare Services. (2009). Medicaid. Retrieved from http://www.cms.hhs.gov/home/medicaid.asp
Charles, C. (2003). The Sharon Kowalski case: Lesbian and gay rights on trial. Lawrence, KS: University Press of Kansas.Find this resource:
Crisp, C. (2006). The gay affirmative practice Scale (GAP): A new measure for assessing cultural competence with gay and lesbian clients. Social Work, 51(2), 115–126.Find this resource:
Doka, K. (1989). Disenfranchised grief: Recognizing hidden sorrow. Lexington, MA: Lexington Books.Find this resource:
Engels, E. A., Biggar, R. J., Hall, H. I., Cross, H., Crutchfield, A., Finch, J. L., Goedert, J. J. (2008). Cancer risk in people infected with human immunodeficiency virus in the United States. International Journal of Cancer, 123(1), 187–194.Find this resource:
Gay and Lesbian Alliance Against Defamation (GLAAD). (2007). Media reference guide (7th ed.). Retrieved from http://www.glaad.org/Document.Doc?id=25
Gay and Lesbian Medical Association. (2006). Guidelines for care of lesbian, gay, bisexual, and transgender patients. San Francisco, CA: Author.Find this resource:
Harcourt, J. (Ed). (2006). Current issues in lesbian, gay, bisexual and transgender (LGBT) health. New York: Harrington Park Press.Find this resource:
Hash, K. (2006). Caregiving and post-caregiving experiences of midlife and older gay men and lesbians. Journal of Gerontological Social Work, 47(3/4), 121–138.Find this resource:
Hash, K., & Netting, F. (2007). Long-term planning and decision-making among midlife and older gay men and lesbians. Journal of Social Work in End-of-Life & Palliative Care, 3(2), 59–77.Find this resource:
Heron, M., Hoyert, D. L., Murphy, S. L., Jiaquan, X., Kochanek, K. D., & Tejada-Vera, B. (2009). Deaths: Final data for 2006. National Vital Statistics Reports, 57(14), 1–135.Find this resource:
Human Rights Campaign. (2005). Gender visibility: A guide to being you. Retrieved from http://www.hrc.org/documents/transgender_visibility_guide.pdf
Human Rights Campaign. (2009). Answers to questions about marriage equality. Retrieved from http://www.hrc.org/documents/HRC_Foundation_Answers_to_Questions_About_Marriage_Equality_2009.pdf
Mayer, K. H., Bradford, J. B., Makadon, H. J., Stall, R., Goldhammer, H., & Landers, S. (2008). Sexual and gender minority health: What we know and what needs to be done. American Journal of Public Health, 98(6), 989–995.Find this resource:
Meckler, G. D., Elliott, M. N., Kanouse, D. E., Beals, K. P., & Schuster, M. A. (2006). Nondisclosure of sexual orientation to a physician among a sample of gay, lesbian, and bisexual youth. Archives of Pediatric Adolescent Medicine, 160(12), 1248–1254.Find this resource:
MetLife Mature Market Institute, Lesbian and Gay Aging Issues Network of the American Society on Aging, & Zogby International (2006). Out and aging: The MetLife study of lesbian and gay baby boomers. Westport, CT: MetLife Market Institute. Retrieved from http://www.asaging.org/networks/LGAIN/OutandAging.pdf
Neville, S., & Henrickson, M. (2006). Perceptions of lesbian, gay and bisexual people of primary healthcare services. Journal of Advanced Nursing, 55(4), 407–415.Find this resource:
Paul, J. P., Catania, J., Pollack, L., Moskowitz, J., Canchola, J., Mills, T., Stall, R. (2002). Suicide attempts among gay and bisexual men: Lifetime prevalence and antecedents. American Journal of Public Health, 92(8), 1338–1345.Find this resource:
Redelman, M. (2008). Is there a place for sexuality in the holistic care of patients in the palliative care phase of life? American Journal of Hospice and Palliative Medicine, 25(5), 366–371.Find this resource:
Rondahl, G., Innala, S., & Carlsson, M. (2006). Heterosexual assumptions in verbal and non-verbal communication in nursing. Journal of Advanced Nursing, 56(4), 373–381.Find this resource:
Salmond, S. W., & David, E. (2005). Attitudes toward advance directives and advance directive completion rates. Orthopaedic Nursing, 24(2), 117–129.Find this resource:
Smolinski, K. M., & Colón, Y. (2006). Silent voices and invisible walls: Exploring end of life care with lesbians and gay men. Journal of Psychosocial Oncology, 24(1), 51–64.Find this resource:
Stein, G. L., & Bonuck, K. A. (2001). Attitudes on end-of-life care and advance care planning in the lesbian and gay community. Journal of Palliative Medicine, 4(2), 173–190.Find this resource:
United States General Accounting Office. (2004). Defense of Marriage Act: Update to prior report. Retrieved from http://www.gao.gov/new.items/d04353r.pdf
Werth, J. (2007). Some personal aspects of end-of-life decision making. University of Miami Law Review, 61, 847–860.Find this resource:
Witten, T. M. (2002). Geriatric care and management issues for the transgender and intersex populations. Geriatric Care and Management Journal, 12(3), 20–24.Find this resource: