By Ames Simmons–
It was around nine years ago at a transgender health and wellness conference that I first heard a healthcare provider talk about a transgender patient who was so fearful of being mistreated in a long-term care facility that they felt forced to “detransition,” or express their gender as it was assigned to them at birth and not as the person they now understood themselves to be. I had not come to terms with my own gender dysphoria then, but I recognized how devastating it would feel to have worked so hard to overcome legal, medical, and social barriers to gender affirmation, only to feel forced to deny it in order to get essential care.
This conference took place about a year after my mom passed away, after my family had spent a long week trying to convince a whole army of hospital workers to recognize my mom’s treatment preferences as set forth in her advance directive. Without that document, my mother would have had to undergo many procedures that she told me she didn’t want. That experience and the fears raised at the conference led me almost a decade ago to think about how advance directives might be used to continue gender-affirming care.
In an earlier edition of this column (https://tinyurl.com/24um323f), I discussed the fears and anxieties that transgender and nonbinary people may have about dementia and potentially losing control over their ability to express their gender identity. I talked about how completing advance directives can help reduce those fears and provide more of a sense of control and peace of mind. In today’s column, I will talk in more detail about what advance directives are, why they are important, and how a new resource can help transgender and nonbinary people put those decisions in writing.
Emerging research shows that transgender people may be at higher risk for dementia, but we don’t know a lot yet about how dementia may interact with gender identity. Transgender and nonbinary people may feel an increase in gender fluidity, which might feel great or might feel unsettling, depending on how the person understands their gender identity now. Care providers may feel unsure about whether to affirm these changes.
Documents called “advance directives” tell care providers what kind of healthcare treatments a person would want if they were unable to speak for themselves. An advance directive that talks about how a transgender person wants their gender identity to be affirmed can give care providers guidance about how to treat them if they are unable to tell them. These documents weren’t created to stop discrimination, but they might help prevent mistreatment by care providers or by family members who are not affirming of a transgender person’s gender identity.
Advance healthcare directives usually contain a section setting out preferences for treatment, which may be called a “living will” in some states. They also usually contain a durable power of attorney for healthcare, which may be called a designation of healthcare agent, proxy, or surrogate decision-maker. As many as 87 percent of transgender and nonbinary people have not completed these documents, sometimes because of practical considerations rising to the top, like finding food, shelter, and employment. Others say they cannot identify anyone in their life whom they would want to make healthcare decisions for them if they were not able to.
Many people think of advance directives as something you only need at the end of life. Some transgender people reported that they never expected to live long enough to reach advanced age. However, much earlier in life a person may have an accident or assault that leaves them unconscious, a mental health crisis, or a brain injury or illness that incapacitates their decision-making.
SAGE and Transgender Law Center have teamed up to create a new planning resource called “Planning for Lifelong Care: Guiding Questions for Transgender & Non-Binary People to Plan for Dementia and Other Serious Illness.” This resource contains guiding questions that are designed to help transgender and nonbinary people clarify their understanding of their gender identity in situations similar to those previously mentioned, and to identify their values about dementia, autonomy, and what is important about quality of life.
For example, some transgender people who think of their gender as a permanent transition from their sex assigned at birth may feel reassured by setting down in writing that they want their current identity to continue to be respected, and their gender-affirming treatment to continue to be provided, post-dementia. They may feel their current gender identity is their only true self, one they fought hard to be recognized. They may experience their gender identity as one of the most important ways of exercising control over their lives.
This is an important conversation for transgender people to have with care providers, because for patients with Alzheimer’s Disease, traditional patient-centered care has called for recognizing and validating the patient’s subjective experience as reality, not convincing them of their historical identity. The reason for this protocol is that it might cause distress to a person living with dementia if they are corrected about their body, name, and pronouns. This area of practice is not settled and will likely take more dialogue and research.
As my work continued, I found other research by transgender people suggesting that the gender-affirming language I had been developing had the effect of privileging identities that conform to the gender binary and to normative concepts of cognition. My work needed to be more inclusive of gender fluidity as well as cognitive fluidity. Transgender and nonbinary people who currently experience their gender identity as fluid may want to preserve that flexibility and not have it be seen as a symptom of dementia. They might feel violated if anyone forced them to dress a certain way or be referred to with different pronouns from how they feel that day. They may prioritize directing their own life and gender expression in the moment.
Transgender and nonbinary people who are receiving medical treatment such as hormone therapy or post-surgical treatment may need to think through this option, because that medical treatment may not be able to be started and stopped on short notice or repeatedly; there is not enough research now to know the answer.
It’s also possible that for some transgender and nonbinary people, none of these concerns may resonate. It’s important that they still complete an advance directive, but perhaps without the legal language about gender affirmation identified in the resource.
There are two ways transgender and nonbinary people can work with the planning resource. A PDF is available in the National Resource Center for LGBTQ+ Aging (https://tinyurl.com/mryu3fep). In addition, there is a web version with links to fillable documents (https://tinyurl.com/2m2y52hb). These clauses are not intended to stand on their own, but rather to be added to a more comprehensive advance directive specific to your state. You can find links to those state-specific forms at https://tinyurl.com/5357wcjk
Everyone involved in the decision-making process should prioritize autonomy and self-determination of the patient or client. Conversations about death as well as about gender identity are both stigmatized in our culture, and new research shows that navigating race and identity can make these conversations even more difficult to navigate in families of color with transgender or nonbinary family members. There is also evidence that gender non-conforming young people who have mental health conditions such as depression find these conversations even more difficult, because they do not want their families to worry that they are considering self-harm simply because they are talking about life planning that includes death.
Because of heightened risks of dementia, advance directives are planning tools that will likely come into play sooner than end of life for many trans people. We should start thinking about advance directives earlier in our life cycle and revisit them periodically as circumstances change. This is especially important for people who have thin social networks and may need to intentionally develop relationships. Transgender and nonbinary people are more likely to experience social isolation and not have wide networks as they age, so they may need lead time to develop them. This can be a great intergenerational project, where younger adults can help serve as older adults’ healthcare agents, and older adults can share their history and experience that will enrich and affirm the experiences younger people are having now.
Planning for lifelong care is an important way of building and sharing community for transgender and nonbinary people of all ages. Talking about these issues with loved ones whom we trust and value can help allay fears and give transgender and nonbinary people some peace of mind as we plan for our future.
Ames Simmons is a queer transgender man who holds a senior fellowship at Duke University School of Law and lectures at George Washington University’s graduate program in LGBT Health Policy & Practice. He is a member of the National Advisory Council of the SAGE and Human Rights Campaign Foundation’s Long-Term Care Equality Index, and the Trans Elders Special Interest Group of the U.S. Professional Association for Transgender Health.
Dr. Marcy Adelman oversees the Aging in Community column. For her summary of current LGBT senior challenges and opportunities, please go to:
http://sfbaytimes.com/challenges-and-opportunties/
Aging in Community
Published on November 2, 2023
Recent Comments