Over the years, LGBTQ+ community members have taken the time to talk with us at The Conversation Project about ways to best meet their needs when it comes to having conversations about what matters most for their health care through the end of life. We’d like to share some of what we’ve learned, what you can do to advocate for your own care or the care of someone important to you, and suggestions for health care providers to keep in mind.
It’s no surprise that we at The Conversation Project tend to focus on conversations — talking with people in your life about what’s important to you, to make sure your wishes are understood and respected. We’ve heard from LGBTQ+ individuals that in addition to these important conversations, documentation of wishes — making sure they are written down and recognized — is an essential focus, too. While no one can promise everything will go perfectly, we believe being proactive about these conversations and documentation, before a crisis, can help to make clear who and what is most important to you, so that you have a say in health care decisions.
For individuals
Here are some things you can do:
- Look at our Conversation Starter Guide to think about your own wishes and values. Think about who you’d like to select as your health care proxy (that’s the one person who speaks on your behalf if you can’t make your own health care decisions). Consider what you’d want them to know about your health care wishes if there’s ever a time you can’t speak for yourself.
- Select a health care proxy. If you want help, review our Guide to Choosing a Health Care Proxy. If you select a partner, chosen family, friend, neighbor, or community member who isn’t legally recognized as your spouse or family, it’s especially important to document your choice.
- Record your wishes for your health care with an advance directive — an important legal document about your choices. In the United States, the website Caring Info can help you find the right forms in your state. You can also ask your doctor’s office.
- We recognize that not everyone has a strong relationship with their family of origin. If there is someone who you do NOT want to be involved in your health care decisions, document that as well. Make sure your health care proxy knows and understands, too.
- Proactively share this information with your health care providers so they have it on file. They may not bring up the topic themselves (especially if you are currently in good health), but you can ask for your wishes to be added to your medical record.
- If you do not have close people to turn to for support with concerns like health care, see our blog post with tips to keep in mind to help make sure your health care aligns with your goals.
For health care providers
The questions we ask and the resources we provide matter when it comes to making sure that everyone can have their wishes for care understood and respected. Many LGBTQ+ people have reported delaying or avoiding necessary medical care because they fear discrimination or mistreatment by health care staff.[1]
A few years ago, we updated our guides using what we’ve learned, with the goal of being more inclusive. We encourage anyone creating patient-facing resources to consider incorporating similar changes such as:
- Using gender-neutral language (for example, “child” instead of son/daughter, use of the singular “they” instead of he/she)
- Avoiding assumptions of relationship types (not assuming marital status, offering space to include information for more than one partner)
- Providing wider examples of who matters most (such as partner, chosen family, cousin, friend, or faith or spiritual advisor)
- Adding illustrations and enhancing diversity of photos, including representation of relationships
If you are a health care provider who is passionate about aligning care with what matters, remember that what matters to some individuals may include:
- The person or people I choose are allowed to be in the room and valued
- My wishes are honored if I do NOT want someone to be part of this process.
- My health care team respects my gender and pronouns
- People acknowledge that my spouse and I are married
- Questions and paperwork don’t make assumptions about my gender, sexuality, or relationships
Let’s hear from researcher Carey Candrian, PhD, about how health care providers can advocate for LGBTQ+ people.
Carey says:
My research focuses on how communication impacts health outcomes in the LGBTQ+ community – especially for those who are older.
Why this community? And why is it harder?
This is a community that is exceptionally high-risk for poor outcomes.
And, many community members have experienced negative consequences – to their actual health – if and when they disclose their sexual orientation or gender identity.
For older LGBTQ+ people who grew up in the 40s, 50s, and 60s, being LGBTQ+ was completely against every cultural norm. In most states, it was illegal. And it was dangerous. In addition to physical risk – being bullied or worse – if people knew you were gay or trans, you could have lost your home, your job and likely be rejected by your family.
So in order to stay safe, many of these folks have hidden the fact that they’re LGBTQ+ for decades. They have developed what I call a habit of silence about a fundamental part of their identity. 48% of older LGBTQ+ adults say their own doctor doesn’t even know they’re LGBTQ+ because they’re afraid if they tell them, their care will get worse.[2]
And there are good reasons for staying fearful. Discrimination is happening all over the health care ecosystem. 56% of lesbian, gay, or bisexual adults experienced discrimination from a health care provider; 70% for those who are trans or non-binary.[3]
Can you imagine how frightening it could feel to share this part of yourself when this is the world you’ve experienced most of your life? And when are the stakes as high as they get? When you’re dealing with your health.
Remember, 48% of these folks haven’t come out to their health care providers. And they’re not going to tell you or anyone on the team unless they feel really safe that there won’t be any backlash.
Incomplete information has consequences at any point in health care but becomes even more acute when patients are dealing with serious illness.
So what can we do?
Legislation is one thing – giving protections to people is long overdue. We can also change the way we communicate: the way we talk and listen to each other. We can do this in three ways: breaking the script, checking our assumptions, and keeping the patient at the center.
One big way is what I call “breaking the script.” Just think about forms, our in-take questionnaires, our admission conversations, are “get-to-know-you” questions. They’re critical tools in medicine because they tell us who a patient is. What they want, what they don’t want. The challenge is these forms and questions are so scripted that they’re limited. And they’re loaded with assumptions.
If your life doesn’t fit the script, which is the case for a lot of LGBTQ+ people, you face a choice: do I come out and risk being treated poorly or do I stay silent and hide a fundamental part of who I am? This choice has concrete effects on health outcomes.
We need to give people space to answer in a way that fits them and their life. And take the burden off the patient to not have to be the one who comes out over and over to a battery of new people when they are sick, scared and tired.
Think about the part of the form that asks about people in the patient’s life.
What we care about is the WHO. Who will be caring for this person at home? Who would they like in the room when talking about diagnosis, treatment, and planning? Who can make health care decisions if they are no longer able to?
Questions to get this information sound like, “Do you live with anyone?” “Who’s the biggest support in your life?”
Check the assumptions the forms as making about important people. What if we asked questions like, “Who do you consider family?” “Who needs to be in the room when talking about your care?” “Who will need support if something happens to you?”
These questions break the script and give patients and their caregivers space to share critically information for their care.
Finally, keep the patient at the center. Think about what you really need to know from a patient when you ask your next question. Then, consider:
What if the patient is trans? What if they are in a same-sex partnership and not legally married? What if they have been rejected by their family of origin? Is their housing at risk if this part of their identity is known?
Does your question shut them up? Or does it say, you’re safe here.
The older LGBTQ+ adults I’ve talked with in my research are not asking for a lot. They just want to talk openly and be heard without prejudice. And all we have to do is break these scripts a little, show them we’re safe, and listen.
Helpful resources:
National LGBT Cancer NetworkThe Uphill Battle for LGBTQ People after Death
Advance Care Planning and the LGBT Community
[1] Discrimination Prevents LGBTQ People from Accessing Health Care, Center for American Progress, 2018 and The Report of the 2015 U.S. Transgender Survey, National Center for Transgender Equality, 2016.
[2] AARP Research: Maintaining Dignity. (March 2018): A survey of LGBT adults age 45 and older. https://www.aarp.org/research/topics/life/info-2018/maintaining-dignity-lgbt.html
[3] Discrimination contributes to poorer heart health for LGBTQ adults. American Heart Association Scientific Statement, 2020. https://newsroom.heart.org/news/discrimination-contributes-to-poorer-heart-health-for-lgbtq-adults