While cancer patients have gained great hope for prolonging life through advances in targeted treatments, healthcare providers may eventually say, “There is nothing more we can do but provide comfort in the remaining days.” Once the patient and loved ones accept that treatments and hopes for improvement must end, a transition toward end-of-life care can begin.
When delivering medical treatment, doctors define good “outcomes” in terms of stabilizing patients and moving them toward physical improvement, recovery, and even cure. But the aims of palliative and end-of life care are to focus on symptoms aggressively and alleviate suffering while maintaining the highest quality of life possible during the patient’s remaining time. The patient and “family” are addressed together as the unit of care. For LGBT patients, “families of choice” may include partners, friends, and ex lovers who may or may not have been welcomed into the healthcare setting. Ideally, patients need to deliver clear decisions to their doctors and loved ones about when to stop extraordinary means of maintaining life. Because LGBT patients are more likely to have non-traditional families, this focus requires disclosure of sexual orientation and gender identity, which may raise concerns about whether they can safely trust their healthcare providers.
In palliative and end-of-life care, patients seek relief from pain and anxiety, and emotional and spiritual comfort and guidance. Patients must decide whether they can set aside old grievances or accept that resolution is impossible with family members who have rejected them in the past. Facing death, many need to express desires about funeral services and practical matters such as the handling of their belongings.
For LGBT patients and their loved ones, this passage becomes fraught with many of the same issues that plague medical care throughout the LGBT patient’s life. How safe is it for a patient to disclose their gender identity, sexual orientation, and who is considered as family? Will healthcare providers welcome the involvement of a same-sex or trans partner and/or shared parenthood with that partner in medical and psychosocial decision making? Will a home health aide treat their LGBT client with compassion? How can a dying LGBT patient who seeks spiritual guidance identify a supportive hospice chaplain? At each stage of this powerful passage, a new group of care providers may enter the scene, giving repeated rise to the same fears and possible discrimination.
To ease the passage through dying for themselves and their loved ones, LGBT patients need understanding and support from palliative and hospice care professionals and spiritual counselors. Two studies (Cloyes, 2018) (Maingi, 2017) point to mounting resources to help LGBT patients and their care providers navigate these end-of-life waters together. They identify the need for improved research, clinical practice, provider education, and access to bereavement programs with the LGBT patient in mind. The National LGBT Cancer Network offers LGBT cultural competence training to healthcare systems across the country. Other resources listed below also offer specific support services, and intersectionality frameworks such as The Health Equity Promotional Model that can help providers understand how historical and social realities affect the LGBT individual as a patient.
All palliative and EOL care professionals would benefit from cultural competence training to help them understand the range of needs of LGBT patients. Training resources would help them understand the needs of LGBT patients and offer the providers a chance to examine and change their biases. In addition to requiring training for staff, healthcare facilities can encourage patients to disclose their sexual orientation and gender identity by updating intake forms and assessment tools with inclusive language and multiple check-off choices. Familiarity with LGBT supportive organizations helps care providers ensure that LGBT patients and their families of choice are offered safe and welcoming referrals. After death, end-of-life care providers should ensure that grief support is extended to the people whom their patients have identified as the bereaved, including referrals to LGBT bereavement groups.
National Resource Center on LGBT Aging Age-Friendly Inclusive Services