Serious Illness Care | FAQs
Q | What do I need to know about care during a serious illness?
Care during a serious illness, like cancer, heart failure, or stroke, may involve more medications and procedures and more interactions with the healthcare system than you’re used to. If you have a serious illness, it is important to consider your goals and values to ensure your care aligns with what is most important to you. Your medical team may ask you further questions about your goals and values, which can include discussions of intensive, curative treatments, like chemotherapy, and questions about interventions like CPR, breathing tubes, and feeding tubes, should you become sicker.
While seeking care for a serious illness, you may benefit from seeing a palliative care clinician to help manage your symptoms and to support you in deciding what is most important to you about your care. Palliative care can be helpful whether or not you are getting curative treatments. You may benefit from hospice care to maintain your comfort and dignity if you are near or at the end of your life.
To record decisions about your healthcare, you can sign a Do Not Resuscitate (DNR) order, fill out a Physician Orders for Life-Sustaining Treatment (POLST) form, and/or prepare an advance directive. Depending on the type and severity of the illness, you may lose consciousness, and a surrogate decision-maker (healthcare proxy) or next of kin would make medical decisions for you. See the My Plans page for more on naming a healthcare proxy.
Q | What should I know if I go to the hospital for an emergency?
Emergency medical technicians (EMTs) may stabilize and transport you to the hospital. EMTs may need to know details about your anatomy, your medications, and any substances you use in order to know which interventions to perform and to provide a comprehensive report to the hospital’s emergency department. If possible, make sure that you have a person you trust to advocate for you and to make medical decisions for you, if you are no longer able. You can do this by naming a surrogate decision-maker, or healthcare proxy, ahead of an emergency.
Q | If I have a serious illness, would I have to stop gender-affirming treatments and procedures?
With the information available now, concrete guidelines have not been created about whether or not to stop hormone therapy (HRT) during a serious illness. Decisions about HRT during a serious illness would involve an ongoing discussion of what's most important to the person and what risk a person is willing to accept. HRT may be stopped in the treatment of some types of estrogen-sensitive breast cancer, for example. Or caregivers of a trans woman with dementia who has had bottom surgery may decide to stop vaginal dilation to support her comfort. Otherwise, continuing HRT may be an essential part of maintaining a person’s mental and physical well-being during a serious illness. Decisions about whether or not to continue HRT during a serious illness should be made after ongoing, person-to-person conversations between you and your healthcare providers.
Q | What do I need to know if I am a younger trans or gender-expansive person with a serious illness?
Many of the same considerations for older people apply to younger trans and gender-expansive adults, with some additions. For advocacy during a serious illness, young people may rely on a chosen support network if they are estranged from biological family. They may also have to reduce work responsibilities for treatment of a serious illness like cancer, which may affect their financial stability. For young trans people with cancer who hope to have children, some treatments could impact their fertility, so they should discuss family planning goals with their healthcare providers.