How to take care of trans patients in hospice

In the United States, more than 1.6 million people identify as transgender. Of these, more than one-fifth are over the age of 65, the vast majority of whom transitioned in the latter part of their lives. Transgender Americans are both living and dying among us: precisely why they health care providers must Improve their approaches to ensuring dignified and respectful care for transgender elders, especially at the end of life.

What trans people hope for in their final moments of life — whether that is months, days, or hours — is no different than what anyone else wishes for. Trans people don’t want to be in pain. Trans people want their decisions to be honored. Trans people want a comfortable environment, to be treated with respect and dignity, and to be in the company of the loved ones they choose. They all want to live their last days authentically.

However, trans patients’ end-of-life journey poses unique challenges, many of which are rooted in their fear of being judged, intentionally or unintentionally humiliated, and excluded from critical care services, including pain relief — things that doctors, nurses, and chaplains sometimes unwittingly contribute to. And while mistreatment of transgender elders in hospice care — whether at home or elsewhere — can take many forms, it almost always stems from a lack of understanding or knowledge about transgender identity and needs, understanding what courses are within- and off-limits, and, in the worst cases, outright bias and discrimination.

We are both nurses. One of us, Dallas, has seen the impact of poor gender-affirming care firsthand and has co-founded a startup nonprofit, Transhealth, to provide, teach, research, and advocate for good gender-affirming care. The other, Cathy, has more than 30 years of experience working in hospice. They both understand that gender-affirming care is simply good health care, and too many are deprived of it, especially when unable to advocate for themselves.

When health care providers mistake patients’ gender or call them by their assigned rather than chosen name, it can be deeply distressing and disrespectful. Choosing a new name is one of the first, most profound public declarations a trans person goes through when first transitioning. Likewise, intentionally keeping one’s birth name amid a gender transition can be a sacred declaration, too. As such, it’s critical that clinicians get patients’ names right from the first meeting and use pronouns that match their patients’ chosen gender identities. Starting with their first interactions, health care workers should introduce their own name and pronouns, leveling the power imbalance, and then ask the individual for their name and pronouns. This is the first step in establishing trust.

Because trans patients’ unique health needs are often misunderstood, accommodations can be lacking, especially within the more specialized hospice setting. What does personalized care look like? It’s when clinicians take the time to affirm and support patients’ daily care rituals that match their gender identities. So a bedridden trans man who hasn’t had “top surgery” might need help binding his chest. A trans woman may need assistance shaving or doing her hair or makeup. Providers should also be supportive of patients’ continued use of hormone therapy, even if it interacts with other medications or diagnoses. One’s social embodiment remains vital even if at the end of life.

Because trans patients sometimes arrive for care in hospice facilities in a stage of advanced need, clinicians caring for trans communities must be extra vigilant as they manage symptoms and offer support and respect. Encountering health care workers who are reticent to care can compound feelings of isolation, discrimination, exclusion, and lack of acceptance. Trans patients might also be held at a distance by fellow hospice patients and their family members. Given that, clinicians must go above and beyond with their trans patients, regularly checking in in all the usual ways (How’s your pain? What do you need? How are you feeling?) as well as ways more specific to their gender identity (Do you have what you need to support your gender identity and gender expression? How is your circle of support being included in your care? Is anything/anyone keeping you from feeling comfortable and like you belong?).

Education is a critical component of delivering gender-affirming hospice care, too. Whether health care systems require it or not, care providers at all levels must take trans-inclusive care courses and training, like the courses offered by GLMA and the Fenway Institute, to fully understand the issues trans patients face. Such learning reinforces behaviors and builds knowledge about what respectful, nonjudgmental, and supportive care looks, sounds, and feels like.

Beyond day-to-day care are social and economic considerations and how they’re affected by a patient’s gender identity. Care providers can ask gentle, open-ended questions to assess whether additional support or resources might be needed: Do you struggle paying for rent, food, utilities, or your medications? Are there any issues with violence at home? These basic questions apply to all individuals, but transgender people are at greater risk for food insecurity, housing insecurity, and safety concerns, so it’s even more important to address them as part of a plan of care.

Conversely, curious questions unrelated to trans patients’ palliative care and well-being are wholly inappropriate. Off-limits are questions like: What was your name before you transitioned? Have you had surgery? What do your family and friends say? Are you a man or a woman? It’s vital that clinicians be aware of the harm these questions can cause.

There are administrative considerations, too. Hospice and palliative care providers often discuss the benefit of advanced directives, which are legal documents that outline the passage of care decision-making responsibilities when the patient is unable. Because transgender patients are sometimes estranged from biological family, these conversations and documents have particular relevance, and health care workers should pursue patients’ wishes while they have the ability to choose who will decide for them at life’s end if not their relatives. Even if a complete legal document isn’t finalized, partial directives are better than no directives at all.

Finally, it’s critical that clinicians not assume that every trans patient’s life has been marked by suffering. Many, many trans men and women have had beautiful, affirmed, supported lives. Clinicians must not assume that all transgender patients are similar. Trans folks must be cared for as individuals first.

Trans elders are part of their communities, both in life and in death. Supporting the overall well-being of trans patients means acknowledging their humanity and affirming their identities as humans first. We, as health care providers and clinicians, must ensure their transgender elders live and die with their dignity intact and their authenticity respected. The quality of their care should reflect their shared humanity, undiminished by their differences.

Dallas Ducar is a mental health nurse practitioner,  fellow of the American Academy of Nursing, and founding CEO of Transhealth in Massachusetts, which offers comprehensive health care for trans and gender-diverse individuals and families. Professor Cathy Campbell is a hospice nurse and Buddhist chaplain at the University of Virginia School of Nursing.

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