Summary
- For anyone creating patient-facing materials, practical approaches can make resources more inclusive for LGBTQ+ individuals and for all patients.
Since 2012, The Conversation Project has focused on serious illness messaging that reaches as many people as possible. That includes LGBTQ+ communities. We aimed to create resources that anyone could pick up and say “this is for me” — without needing to identify with a specific group. We continue to learn, and along the way, we’re often asked what has worked for us. Here, we’re sharing a few practical approaches that have helped us reach more people.
For anyone creating patient-facing materials, here are specific language and imagery choices that have helped make our resources more inclusive:
- Use gender-neutral language whenever gender is not relevant. Review stories and remove gendered language if unnecessary. For example, use “child” instead of son/daughter, “spouse” or “partner” instead of husband/wife, “parent” instead of mother/father, and singular “they” instead of he/she.
- Avoid assumptions about relationships. Don’t assume marital status or monogamy; allow space for people to name more than one partner or support person. We also avoid the phrase “loved one,” recognizing that family relationships can be complex or strained.
- Offer a wide range of examples of “who matters most,” such as partner, chosen family members, cousin, friend, or faith/spiritual advisor.
- Use photography or illustrations that reflect the community you serve, including representation of diverse gender expressions and a variety of relationships.
- Partner with LGBTQ+ individuals to review language and imagery before you roll out the new tool. Compensate contributors for their time.
Our goal is not to create materials only for LGBTQ+ audiences, but to ensure that materials feel inclusive and appropriate for many people. This process also called attention to broader intersectional opportunities. For example, we incorporate illustrations and photos reflecting various ages and racial and ethnic backgrounds; and images of people with disabilities, including use of adaptive equipment. We’ve developed multiple language translations and audio versions of our guides.
When engaging LGBTQ+ individuals, be prepared for priorities and concerns that may not always be acknowledged in health care settings, such as:
- The person or people I choose are allowed to be in the room and treated as important members of my care team
- My wishes are honored if I do not want someone involved in this process
- My health care team respects my gender identity and pronouns
- My spouse and our relationship are recognized and respected
- Forms and questions do not make assumptions about my gender, sexual orientation, or relationships
As with any patient, what matters most is unique to the individual and may range from, “I want to be able to dance at my child's wedding next year,” to “I’m worried about the costs of the care," to “It bothers me when you tuck my sheets around my feet.”
The most important lesson we’ve learned along the way is to stay open to feedback and prioritize changes that make materials more accessible to more people. In that spirit, we’d love your feedback if there’s something that has worked well for you or if there’s something we’ve left out — please email us your thoughts at conversationproject@IHI.org.
For more info on LGBTQ+ experience at the end of life, explore these resources:
- How You Want to Live Through the Rest of Your Life: Queering Cancer’s Q&A with The Conversation Project
- Focusing on What Matters Most to LGBTQ+ Individuals
- End-of-Life Series: Advance Care Planning Discussion Guide & Video from SAGE, the National Resource Center on LGBTQ+ Aging
Kate DeBartolo is a Senior Director at IHI. She currently leads The Conversation Project.
The Conversation Project, an initiative of the Institute for Healthcare Improvement, helps people share their wishes for care through the end of life so those wishes can be understood and respected.
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