LGBT Best and Promising Practices Throughout the Cancer Continuum
Explore the best and promising practices, understand cross-cutting issues, and filter the strategies throughout the stages of the cancer continuum.
To learn about the people involved, the methodology employed, and, of course, the more than 100 Best and Promising Practices, download the full report.
Recognize that disclosure of layered and intersectional identities is complicated for LGBT individuals seeking health prevention services. They must negotiate whether and how to come out to multiple providers about being LGBT.
Cross-Cutting Issues
Provide ongoing education on LGBT cultural competence to the entire health care work force, especially those that interact with LGBT patients, their family, and their chosen support person(s).
Cross-Cutting Issues
Develop and implement effective guidelines, interventions, and programs aimed at decreasing the cancer burden for LGBT populations, with intentional and careful adaptation for all segments of the LGBT communities.
Cross-Cutting Issues
Develop and/or implement LGBT-specific health education and prevention messages, materials (print and online), and resources, developed in consultation with community advisory boards and other consumer groups.
Cross-Cutting Issues
Public Health Department Recommendation:
Collaborate with community partners on LGBT-tailored prevention and health promotion activities.
Cross-Cutting Issues
Public Health Department Recommendation:
Include LGBT communities in state cancer plans.
Cross-Cutting Issues
Public Health Department Recommendation:
Include LGBT community-based organizations in state cancer coalitions.
Develop and/or use LGBT-tailored cancer screening guidelines for LGBT communities.
Cross-Cutting Issues
Engage culturally competent patient navigators for LGBT patients from the time of screening through the cancer care continuum.
Cross-Cutting Issues
Include LGBT individuals’ support networks (i.e., family of choice) whenever possible during screening process and procedures.
Cross-Cutting Issues
Tailor screening messages and utilize effective media with particular attention to diverse sub-groups within LGBT communities.
For example, involve screening messengers, ambassadors, and witnesses known as credible in their respective communities
Cross-Cutting Issues
Educate the LGBT communities about the importance of cancer screening, with emphasis on malignancies that disproportionately affect LGBT individuals, using a variety of media and campaigns shown to be effective or promising with LGBT communities in general and/or with specific sub-groups.
Cross-Cutting Issues
Public Health Department Recommendation:
Support culturally competent delivery of services that increase access to and utilization of cancer screening.
Cross-Cutting Issues
Public Health Department Recommendation:
Support recruitment and utilization of patient navigators that are culturally competent and sensitive to the disparities and needs of the LGBT population.
Train all staff who interact with patients/caregivers (including clerical, technicians, patient navigator, pharmacy, housekeeping, food service, etc.) in LGBT cultural competence.
Cross-Cutting Issues
Eliminate discriminatory and arbitrary exclusion from diagnostic testing, (e.g., due to discordance between gender markers and anatomy).
Cross-Cutting Issues
Anticipate, identify, and eliminate barriers to diagnostic procedures for LGBT individuals and communities.
Cross-Cutting Issues
Include patients’ support networks (i.e., family of choice) during diagnosis and decision making.
Include LGBT topics in all cultural competence training across the health care treatment workforce (including clerical, technicians, patient navigator, pharmacy, housekeeping, food service, etc.).
Cross-Cutting Issues
Public Health Department Recommendation:
Create and/or expand culturally competent LGBT provider listings/registries.
Train all staff who interact with LGBT patients/caregivers (including clerical, technicians, patient navigator, social work, pharmacy, housekeeping, food service, etc.) in culturally competent language and LGBT survivorship issues.
Cross-Cutting Issues
Provide cultural and age appropriate cancer services to LGBT youth survivors.
Cross-Cutting Issues
Recognize the complexity of disclosure for LGBT survivors who must negotiate whether and how to come out to multiple providers about being SOGI and to potential sexual partners about their cancer status. Respect that sometimes withholding is safer.
Conduct research on the end-of-life/chronic illness experiences of LGBT patients and their caregivers, including the development of LGBT-specific psychosocial, spirituality, and existential distress measures.
Cross-Cutting Issues
Address the complex spiritual needs of LGBT patients and families of choice with awareness of the fear and distrust of faith-based communities experienced by many LGBT communities. This includes respecting the choice of not wanting spiritual/pastoral care.
Cross-Cutting Issues
At the end-of-life, dignified death is a priority for LGBT patients. Unique topics such as continuation of hormone therapy for transgender patients as well as respect for patient choice of burial and death rituals need to be addressed.
Cross-Cutting Issues
Include psychosocial distress, suicide risk, financial planning, relationship with family of origin, and current families of choice when performing screening and intake of LGBT cancer patients.
Cross-Cutting Issues
Discuss and formalize surrogate decision-making during initial patient encounter, including medical proxy documentation, formalization of custody of dependent children, and hospital visitation forms. Recognize that it is a patient’s legal right to include family of choice. These discussions must reflect rapidly changing laws, regulations, and accrediting standards at the national, state, and institutional levels. Advance directives and Physician Orders for Life Sustaining Treatment (POLST) should follow patients across multiple care settings.
Cross-Cutting Issues
Public Health Department Recommendation:
Support training for palliative care and hospice providers on LGBT cultural competence.
Cross-Cutting Issues
Public Health Department Recommendation:
Support LGBT-tailored interventions and health promotion.
Recognize that disclosure of layered and intersectional identities is complicated for LGBT individuals seeking health prevention services. They must negotiate whether and how to come out to multiple providers about being LGBT.
Cross-Cutting Issues
Provide ongoing education on LGBT cultural competence to the entire health care work force, especially those that interact with LGBT patients, their family, and their chosen support person(s).
Cross-Cutting Issues
Develop and implement effective guidelines, interventions, and programs aimed at decreasing the cancer burden for LGBT populations, with intentional and careful adaptation for all segments of the LGBT communities.
Cross-Cutting Issues
Develop and/or implement LGBT-specific health education and prevention messages, materials (print and online), and resources, developed in consultation with community advisory boards and other consumer groups.
Cross-Cutting Issues
Public Health Department Recommendation:
Collaborate with community partners on LGBT-tailored prevention and health promotion activities.
Cross-Cutting Issues
Public Health Department Recommendation:
Include LGBT communities in state cancer plans.
Cross-Cutting Issues
Public Health Department Recommendation:
Include LGBT community-based organizations in state cancer coalitions.
Develop and/or use LGBT-tailored cancer screening guidelines for LGBT communities.
Cross-Cutting Issues
Engage culturally competent patient navigators for LGBT patients from the time of screening through the cancer care continuum.
Cross-Cutting Issues
Include LGBT individuals’ support networks (i.e., family of choice) whenever possible during screening process and procedures.
Cross-Cutting Issues
Tailor screening messages and utilize effective media with particular attention to diverse sub-groups within LGBT communities.
For example, involve screening messengers, ambassadors, and witnesses known as credible in their respective communities
Cross-Cutting Issues
Educate the LGBT communities about the importance of cancer screening, with emphasis on malignancies that disproportionately affect LGBT individuals, using a variety of media and campaigns shown to be effective or promising with LGBT communities in general and/or with specific sub-groups.
Cross-Cutting Issues
Public Health Department Recommendation:
Support culturally competent delivery of services that increase access to and utilization of cancer screening.
Cross-Cutting Issues
Public Health Department Recommendation:
Support recruitment and utilization of patient navigators that are culturally competent and sensitive to the disparities and needs of the LGBT population.
Train all staff who interact with patients/caregivers (including clerical, technicians, patient navigator, pharmacy, housekeeping, food service, etc.) in LGBT cultural competence.
Cross-Cutting Issues
Eliminate discriminatory and arbitrary exclusion from diagnostic testing, (e.g., due to discordance between gender markers and anatomy).
Cross-Cutting Issues
Anticipate, identify, and eliminate barriers to diagnostic procedures for LGBT individuals and communities.
Cross-Cutting Issues
Include patients’ support networks (i.e., family of choice) during diagnosis and decision making.
Include LGBT topics in all cultural competence training across the health care treatment workforce (including clerical, technicians, patient navigator, pharmacy, housekeeping, food service, etc.).
Cross-Cutting Issues
Public Health Department Recommendation:
Create and/or expand culturally competent LGBT provider listings/registries.
Train all staff who interact with LGBT patients/caregivers (including clerical, technicians, patient navigator, social work, pharmacy, housekeeping, food service, etc.) in culturally competent language and LGBT survivorship issues.
Cross-Cutting Issues
Provide cultural and age appropriate cancer services to LGBT youth survivors.
Cross-Cutting Issues
Recognize the complexity of disclosure for LGBT survivors who must negotiate whether and how to come out to multiple providers about being SOGI and to potential sexual partners about their cancer status. Respect that sometimes withholding is safer.
Conduct research on the end-of-life/chronic illness experiences of LGBT patients and their caregivers, including the development of LGBT-specific psychosocial, spirituality, and existential distress measures.
Cross-Cutting Issues
Address the complex spiritual needs of LGBT patients and families of choice with awareness of the fear and distrust of faith-based communities experienced by many LGBT communities. This includes respecting the choice of not wanting spiritual/pastoral care.
Cross-Cutting Issues
At the end-of-life, dignified death is a priority for LGBT patients. Unique topics such as continuation of hormone therapy for transgender patients as well as respect for patient choice of burial and death rituals need to be addressed.
Cross-Cutting Issues
Include psychosocial distress, suicide risk, financial planning, relationship with family of origin, and current families of choice when performing screening and intake of LGBT cancer patients.
Cross-Cutting Issues
Discuss and formalize surrogate decision-making during initial patient encounter, including medical proxy documentation, formalization of custody of dependent children, and hospital visitation forms. Recognize that it is a patient’s legal right to include family of choice. These discussions must reflect rapidly changing laws, regulations, and accrediting standards at the national, state, and institutional levels. Advance directives and Physician Orders for Life Sustaining Treatment (POLST) should follow patients across multiple care settings.
Cross-Cutting Issues
Public Health Department Recommendation:
Support training for palliative care and hospice providers on LGBT cultural competence.
Cross-Cutting Issues
Public Health Department Recommendation:
Support LGBT-tailored interventions and health promotion.
Cross-Cutting Issues
Sexual Orientation and Gender Identity (SOGI) Data Collection
Collecting LGBT data as a core demographic variable, similar to race/ethnicity data in surveys and registries, should become the standard, not the exception, across the cancer continuum. The continued lack of SOGI data collection exacerbates LGBT invisibility and perpetuates LGBT cancer disparities, despite evidence of multiple disparities across the cancer continuum.
For example, successful data collection includes collecting SOGI measures in the following arenas:
A requirement for providing a minimum standard of care for LGBT patients, clients, and their support systems of choice is a workforce that is culturally competent in meeting the needs of LGBT individuals, caregivers, and communities across the cancer continuum.
For example, the components of an LGBT culturally competent work force include:
Training and continuing education on LGBT cancer topics for all levels of providers who have contact with patients and caregivers, including administrative and security staff
Specific training on respectful and effective practices and communication
Best practices call for changes in prevention and health care systems to improve health information, communication, informed decision making, and access to health services. Systemic changes in cancer care must be addressed separately from training the individuals who work within the system.
For example, needed system-wide changes include:
Eliminating barriers to LGBT access, retention, and completion of cancer prevention and care
Altering the health care environment, e.g., adding SOGI to intake forms and EHR, providing gender neutral bathrooms
Addressing inequalities in policies, administration, and health insurance
Health literacy for LGBT patients, clients, and their support systems of choice require culturally competent health education resources. Such resources will help patients and clients to understand basic health information, navigate available services, and make appropriate health decisions throughout the cancer continuum. Targeted resources and programs need to be developed as a measurable standard across the cancer continuum.
For example, successful information and education programs include:
LGBT-specific, tailored interventions across the cancer continuum
LGBT-specific health promotion materials and events
Targeted LGBT tools and referrals
Funding and collaboration for community empowerment
Best Practices in LGBT cancer care require an understanding of the diversity of LGBT personal and community identities. Individual LGBT identities and the LGBT communities are shaped by a host of characteristics that include, but are not limited to, race/ethnicity, social class/economic status, sexual orientation, gender identity and expression, nationality, disability, individual health care history, oppression, and discrimination. These intersectional characteristics have different significance, expression, and denote different needs throughout the cancer continuum.
For example, a successful focus on diversity and intersectionality includes:
Encouraging disclosure of layered LGBT identities
Recognizing the diverse family and support systems of choice in LGBT communities
Understanding the role of social determinants of health for LGBT individuals and communities
Addressing the multiple stigmas many LGBT patients experience in healthcare
Sensitivity to comorbidities in the LGBT health disparities, including those diagnoses overrepresented in the LGBT communities
This section contains best and promising practices in the arena of health promotion and cancer prevention (primary through tertiary). Overall, these practices focus on ensuring a culturally competent health promotion workforce and on engaging and empowering the LGBT communities. Historically, local LGBT health promotion groups have focused primarily on HIV/AIDS and STIs (Sexually Transmitted Infections) care. Issues such as cancer, cancer risk factors, and social determinants of cancer-related health have not been identified or addressed for the LGBT community due to a lack of systematic data collection. To promote LGBT cancer-related health, we must identify LGBT individuals in the population at large, develop tailored prevention and health promotion messages in collaboration with LGBT communities, and develop interventions that address social determinants of health and cancer risk factors. Finally, we must empower individuals and communities to develop sustainable, community-based interventions to improve or maintain health. All of these best practices must be embedded within a culturally competent and culturally safe health care system operating across the cancer continuum.
This section contains best and promising practices related to cancer screening in the LGBT communities. Given that the LGBT community has higher rates of cancer-related risk factors, such as smoking and infection with HIV/AIDS and other STIs (Sexually Transmitted Infections), culturally competent screening practices are essential for this population. Incidence and mortality rates of cancer have been decreasing in the United States, research to date anticipates a correlation with a reduction in risk factors like smoking. However, we do not yet know if this trend is reflected in the LGBT communities. Implementing culturally competent practices for screening in the LGBT communities can reduce the public health burden of cancer through early detection and early treatment in this underserved group.
This section contains best and promising practices to better serve LGBT patients and their support networks through cancer diagnosis. These practices focus on ensuring that diagnostic modalities are applied in an appropriate and culturally competent manner to the LGBT communities. Implementation of these best and promising practices may reduce disparities in access to diagnostics, and disparate health outcomes including morbidity and mortality.
This section contains best and promising practices to better serve LGBT patients and their support networks throughout cancer treatment. These practices focus on ensuring that treatment modalities are applied in an appropriate and culturally competent manner to the LGBT communities and that disparities in treatment outcomes are detected and eliminated by including SOGI status in relevant data collection. Implementation of these best and promising practices will reduce disparities in access to treatment, and health outcomes, including quality of life as well as morbidity and mortality.
A small but growing body of research confirms that LGBT cancer survivors experience additional challenges in survivorship and that these needs are rarely adequately addressed by traditional health and social services. This section contains best and promising practices that will help LGBT survivors and their support networks (i.e., family of choice) to eliminate disparate health outcomes.
There is growing awareness of the bias and discrimination experienced by LGBT individuals, their partners, and caregivers. We have seen shifts in societal attitudes as well as expanded legal protections in areas such as hospital visitation rights and surrogate medical decision making. However, discrimination continues and is especially problematic when navigating healthcare systems including hospice and palliative care settings. LGBT individuals may distrust specific aspects of palliative medicine teams such as pastoral care because of past rejections by faith-based communities. Other barriers to culturally competent hospice and palliative care include social and familial rejection, fear of revealing minority status, lack of legal protections, and fear of discrimination at the end of life.
This report includes five cross-cutting issues, sometimes called overarching themes, which cut across the six stages of the cancer continuum and the public health section. Instead of just listing the cross-cutting issues for this document each of the best and promising practices (BPPs) has been associated with the pertinent cross-cutting issue(s). The five cross cutting issues are not exhaustive but the five that are listed are the most inclusive and universal among the BPPs in this report.
The five cross-cutting issues can also be found in different state and federal cancer control plans, scientific literature, and as focus areas of work in various government agencies. These five issues were determined via an iterative process where each of the cross-cutting themes emerged from the initial collection of BPPs found in this report, then were reinforced via the weighing of the evidence using both the scientific and gray literature.
