End-of-Life Care | FAQs
Q | What should I think about when it comes to care at the end of life?
Care at the end of life often shifts the focus from curing an illness or condition to improving quality of life for the remainder of the person’s life. For people that have less than six months of life left, this kind of care may be provided by hospice providers at home, in a long-term care facility, or in the hospital. While on hospice, a person may be visited regularly by a nurse, a nurse’s aide, a social worker, and a chaplain, if desired. This team helps manage a dying person’s physical, mental, and spiritual needs.
Just like any person at the end of life, trans and gender-expansive people deserve skillful and compassionate care that respects their identity and autonomy. However, trans and gender-expansive people may be at higher risk for discriminatory treatment at the end of life. To protect against poor treatment, you can complete an advance directive to document wishes for your care. You can also name a person, called a healthcare proxy, to speak up for you when you become unable. Your healthcare proxy will be able to communicate your wishes to trusted people in your support network and to trusted healthcare providers. Naming a healthcare proxy should be done early, before you are sick or at the end of life.
See the My Plans page for more details about completing an advance directive and naming your healthcare proxy.
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Stein GL, Berkman C, Acquaviva K, et al. Project Respect: experiences of seriously ill LGBTQ+ patients and partners with their health care providers. Health Affairs Scholar. 2023;1(4):qxad049. doi:10.1093/haschl/qxad049
Stein GL, Berkman C, O’Mahony S, Godfrey D, Javier NM, Maingi S. Experiences of Lesbian, Gay, Bisexual, and Transgender Patients and Families in Hospice and Palliative Care: Perspectives of the Palliative Care Team. J Palliat Med. 2020;23(6):817-824. doi:10.1089/jpm.2019.0542
Q | What does end-of-life care look like for people from different cultural backgrounds?
Trans and gender-expansive people come from diverse backgrounds, and their care at the end of life should be sensitive to the histories, beliefs, and practices of their cultures. While there are too many cultural backgrounds to feature here in depth, trans and gender-expansive people and people in their support networks have the right to receive care from providers who are willing attend to their cultural needs at the end of life.
Example. A trans woman finds comfort in her Episcopal faith, so she asks the hospice chaplain if he could arrange for a priest to administer last rites before she dies.
Example. The care partner of an Indigenous trans person requests care from healthcare providers that aligns with their view of death as a journey to the Spirit World.
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Monette EM. Cultural Considerations in Palliative Care Provision: A Scoping Review of Canadian Literature. Palliat Med Rep. 2021;2(1):146-156. Published 2021 May 20. doi:10.1089/pmr.2020.0124
Q | What should I know about continuing my gender-affirming care at the end of life?
With the information available now, we don't have concrete guidelines about when to stop gender-affirming treatments at the end of life. Treatment decisions would involve an ongoing discussion of what's most important to the person and what promotes their quality of life. For some trans and gender-expansive people, continuing hormone therapy (HRT) until the end of their lives may be possible. And continuing gender-affirming personal care, like facial shaving for trans women, would preserve their dignity. On the other hand, some procedures, like vaginal dilation, may be stopped if it takes away from a person’s quality of life at the end of life.
Example. A trans man on hospice shares his wish for chest-binding to continue when he can no longer do it himself.
Q | What should I know about the care of my body after death?
After death, the body is prepared for burial according to a person’s wishes and cultural practices. It is important for a person with specific wishes for their burial to make funeral plans and to appoint a trusted person to carry out those plans. Making these arrangements is especially important for a trans or gender-expansive person who would like their gender identity to be represented during funeral ceremonies and in announcements like the obituary. Without plans in place, it is possible for someone to make decisions against a person’s wishes. It would be possible for their body to be presented in clothing aligned not with their gender identity but with their sex assigned at birth. Or their deadname and the wrong pronouns may be used in funeral announcements. To avoid these indignities, you can:
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Appoint an agent to carry out funeral arrangements (process varies by state). For example, to appoint a funeral agent in Virginia, a person can complete a "Designee Agreement" and have it notarized.
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Record your funeral wishes in an advance directive or will, and discuss funeral wishes with your agent.
See the End-of-Life tab on the my Plans page for more information on funeral planning.
Q | What if I would like to explore options besides burial?
Instead of burial, which can be very costly and not environmentally friendly, you may choose alternatives like cremation, aquamation, composting and other eco-friendly options, or donating your body to science. Cremation is a formal process of turning a deceased person’s body to ash that can be returned to the person’s designated agent, usually in an urn. Aquamation is an eco-friendly process that uses water, heat, and an alkaline solution to dissolve the body tissue of the deceased. Composting involves transforming a deceased person’s body into soil over time. To donate your body to science, you can make arrangements to preserve your body for scientific purposes well in advance of your death through a trustworthy program operated by a university or nonprofit organization.
Example. A trans woman specifies in her funeral directive that she wants an eco-friendly tree pod burial, in which her remains would be placed in a biodegradable pod that would break down over time to serve as fertilizer for a tree planted above.
These processes are the same for trans and cisgender people, but it is especially important for you as a trans person to document your wishes for your preferred burial alternative well in advance and to specify who will receive your remains, if applicable. This is to ensure your wishes are carried out and to prevent people you do not want involved in this process from being able to make decisions against your wishes.
Consider naming a person you trust to be your funeral agent, who can carry out your wishes after you die. For information about designating a funeral agent by state, see this resource from the Funeral Consumers Alliance→.
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Q | What can I do to cope with grief and loss?
Everyone’s experience of grief is different. For some, grief is brief and passing, for others it lasts years, and for others it is complicated by depression or substance use. Some people may experience anticipatory grief, which is a form of grief that comes up before a loss happens. For example, a person might feel anticipatory grief about their relationship with their spouse who is dying of cancer.
Coping with grief is also unique to each person. Some coping strategies include:
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Letting yourself feel your grief and getting support from a counselor or loved one to process it.
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Turning to your faith and spiritual community, if applicable, for support and guidance.
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Seeking support from a grief counselor who is trained to help you heal from your loss.
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Taking good care of yourself. When you’re grieving it’s easy to forget self-care, but self-care is essential for healing.
If you’re looking for LGBTQIA+ friendly grief support, look for support groups like the Queer Grief Club→.
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Sources
Monette EM. Cultural Considerations in Palliative Care Provision: A Scoping Review of Canadian Literature. Palliat Med Rep. 2021;2(1):146-156. Published 2021 May 20. doi:10.1089/pmr.2020.0124
Stein GL, Berkman C, Acquaviva K, et al. Project Respect: experiences of seriously ill LGBTQ+ patients and partners with their health care providers. Health Affairs Scholar. 2023;1(4):qxad049. doi:10.1093/haschl/qxad049
Stein GL, Berkman C, O’Mahony S, Godfrey D, Javier NM, Maingi S. Experiences of Lesbian, Gay, Bisexual, and Transgender Patients and Families in Hospice and Palliative Care: Perspectives of the Palliative Care Team. J Palliat Med. 2020;23(6):817-824. doi:10.1089/jpm.2019.0542