LGBT Best and Promising Practices Throughout the Cancer Continuum

Ensure that disclosure of SOGI and sexual behavior is safe (confidential, private, affirming, accepted without judgment) during all individual intake and clinical/community encounters.

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.

Create a welcoming and safe environment for LGBT patients (including but not limited to gender-neutral restrooms, physical and virtual environments, forms, health literature, and in-person communications occurring in the health setting).

Acknowledge and prioritize health promotion programs in consultation and collaboration with the LGBT communities within your service area to ensure that messages are targeting the communities’ perceived needs.

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.

Seek and fund programs and campaigns that address LGBT cancer prevention and health promotion.

Enhance patient navigation projects (where available) to provide culturally relevant services for LGBT cancer survivors.

Implement and support LGBT-tailored programs, messages, and policies that improve access to physical activity, nutrition, obesity prevention, smoking cessation, cancer awareness, cancer related vaccines (i.e., human papillomavirus (HPV) immunizations), and chronic disease programs.

Include LGBT communities in state cancer plans.

Include LGBT community-based organizations in state cancer coalitions.

Identify LGBT individuals who are at higher risk for cancer and revise screening guidelines to incorporate LGBT-inclusive risk assessment.

Eliminate discriminatory and arbitrary exclusion from screening procedures due to discordance between gender markers and anatomy.

Work with the local LGBT communities to identify and reduce regional and specific barriers to timely cancer screening.

Ensure that LGBT patients receive prompt follow up after abnormal screening results, as well as timely and culturally competent coordination of transition to cancer care in order to mitigate attrition and delays.

Include LGBT individuals’ support networks (i.e., family of choice) whenever possible during screening process and procedures.

Provide management, leadership, and coordination for LGBT-centered screening promotions.

Adopt federal model of requiring LGBT non-discrimination policy statements for all Health Department-funded entities.

Establish partnerships with multiple (3 minimum, local or national) LGBT organizations to vet and provide technical assistance in the development and implementation of screening campaigns/materials.

Support culturally competent delivery of services that increase access to and utilization of cancer screening.

Support recruitment and utilization of patient navigators that are culturally competent and sensitive to the disparities and needs of the LGBT population.

Collect and include SOGI data in patient intake and registration forms, medical records, patient satisfaction surveys, and health outcome measures. Then ensure SOGI data are collected in cancer registries, other population-based registries, and databases.

Include LGBT individuals in research trials of diagnostic tests.

Develop guidelines for culturally competent LGBT patient navigation programs including training for all patient navigators.

Mitigate delays and attrition between screening and diagnosis, and between diagnosis and treatment in compliance with established guidelines by ensuring timely and culturally competent coordination of care.

Provide gender-neutral diagnostic facilities and programs – particularly in relation to gendered cancers (e.g., breast or gynecological cancers) that may take place in gender-specific facilities.

Eliminate discriminatory and arbitrary exclusion from diagnostic testing, (e.g., due to discordance between gender markers and anatomy).

Anticipate, identify, and eliminate barriers to diagnostic procedures for LGBT individuals and communities.

Include patients’ support networks (i.e., family of choice) during diagnosis and decision making.

Support policies and programs that address LGBT compliance with established clinical time intervals from screening to diagnosis.

Include SOGI categories as part of core demographic data in clinical studies/trials and a requirement for human subject research.

Collect SOGI data in patient intake forms, clinical encounters, patient satisfaction surveys, and health outcome measures. Then ensure SOGI data are collected in cancer registries, other population-based registries, and databases.

Ensure compliance with treatment guidelines regardless of SOGI or gender transition care.

Ensure nondiscrimination on the basis of SOGI in hospital visitation, surrogate medical decision making, etc. for Centers for Medicare & Medicaid Services and Joint Commission Accrediting Standards.

Ensure the inclusion of LGBT individuals in all private and public human subjects cancer research.

In the absence of LGBT-specific treatment guidelines, follow standard of care/current treatment data to meet the standard of care.

Ensure timely and culturally competent coordination of care in order to mitigate delays and attrition between screening and diagnosis and between diagnosis and treatment to comply with established guidelines.

Provide gender neutral diagnostic facilities and programs for all cancers, including cancers traditionally treated in gender-specific facilities.

Address sexual intimacy and other quality of life (e.g., fertility, gender reassignment surgery) concerns as they relate to treatment options.

Be aware of and responsive to barriers based on SOGI in symptom management.

Support policies that address and encourage LGBT culturally competent treatment.

Support policies and programs to improve LGBT compliance with established clinical time intervals from screening to treatment.

Collaborate with hospitals and other health care systems to include LGBT issues in Patient Bill of Rights.

Create and/or expand culturally competent LGBT provider listings/registries.

Offer LGBT cancer survivors access to culturally competent support services either through the creation of LGBT-specific support groups, referrals to community groups, or at a minimum training support service staff to provide LGBT culturally competent care.

Offer LGBT families of choice access to culturally competent support services either through the creation of LGBT-specific groups, referrals to community groups, or at a minimum training support service staff to provide LGBT culturally competent care.

Address directly (or via referral) the legal and financial impact of cancer on LGBT individuals and their families of choice.

Develop protocols for protecting the fertility options of LGBT cancer patients prior to treatment and include survivors in decision making about fertility.

Eliminate barriers to access.

Collaborate with hospitals and other health care systems to include LGBT issues in Treatment Summaries and Cancer After Care Plans/Survivorship Care Plans.

Develop and maintain a list of LGBT culturally competent support groups, programs, and resources.

Collect SOGI data for all patients at initial encounters, and create individualized plans in regard to disclosure or nondisclosure of SOGI to others.

Provide in-person and/ or virtual access to culturally competent and/or LGBT-specific bereavement programs for LGBT support networks (i.e., family of choice), recognizing the increased risk for disenfranchised grief.

Address the increased risk of mental health problems and unique psychosocial barriers that exist for some LGBT cancer patients, and ensure that existing quality standards for pain and symptom management are met.

Ensure timely care coordination for LGBT patients including prompt referral to culturally competent palliative care providers soon after diagnosis to reduce distress, improve symptom management, and increase retention in treatment.

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.

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.

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.

Eliminate barriers to access.

Support policies, systems change, research, and programs that increase the availability of culturally competent end-of-life and palliative care for the LGBT community.