Palliative care delivery approaches that are not gender-inclusive can contribute to significant quality issues in caring for transgender populations.
Palliative professionals are among the health care providers with room for improvement in their gender affirming practices, according to Zachary Fried, licensed clinical social worker and training supervisor of Optum at Home, a subsidiary of UnitedHealth Group (NYSE: UNH).
Greater training and awareness around gender inclusivity is needed among palliative care providers to improve their understanding how to care for underserved transgender populations, Fried said during the National Hospice and Palliative Care Organization’s (NHPCO) Virtual Interdisciplinary Conference.
“It’s important to understand that just because you have a transgender patient does not mean that being transgender is the main thing you focus on,” Fried said. “It’s [also] important when we talk about transgender patients to also consider the impact of race, sexual orientation, national origin and other different identities and how they intersect to create a unique lived experience. We want folks to think about what training opportunities would be helpful to enhance the care delivery of diverse patients.”
Nearly a quarter (21.3%) of 865 interdisciplinary palliative professionals indicated that they had observed some form of discriminatory care delivered to a transgender patient in a recent study published in Cambridge University Press’ journal Palliative Support Care.
Furthermore, 85.3% of study participants said they witnessed disrespectful care, while inadequate and abusive care was observed by 35.9% and 10.3% of palliative teams, respectively.
Widespread stereotypes and discrimination of transgender populations have led to mistrust and patients feeling unsafe and unheard by their health care providers, Fried stated. For instance, providers may lack familiarity on how to appropriately discuss a person’s gender identity, which can contribute to a transgender patient feeling invisible, discriminated against and trigger traumatizing experiences.
Ultimately, the negative impacts include a lack of access and quality of care for seriously ill transgender patients, Fried indicated.
“It’s not just past, but also present experiences that are still in existence and impact the quality of care that transgender patients receive,” Fried said. “LGBTQ+ patients may feel unsafe if they’re not sure of their health care providers’ attitude towards their identity. Transgender patients may avoid interacting within the health care system due to experiences of discrimination, and as a result they may present with more advanced stages of illness because they’re delaying medical care.”
Developing trust, empathy and understanding with a patient are particularly important pieces of quality gender-affirming palliative care delivery, according to Fried. This takes careful consideration around how palliative providers assess patients’ pain and symptoms, as well as ongoing communications of their nonmedical social determinant of health needs, he stated.
A key is ensuring that staff receive ongoing education around gender affirmative terminology along with training on recognizing their own personal biases and assumptions, Fried said. Palliative providers must also have internal review processes in place at their organizations to examine any potential discriminatory practices, he added.
Understanding a transgender’s chosen versus biological family as their core caregiver unit is among the main priorities to address in education efforts, according to Daniel Morrow, hospice pharmacist consultant and senior clinical manager at Enclara Pharmacia.
“Chosen family versus biological family is an important question, because we want to know who the best caregiver is going to be for a patient,” Morrow said at the NHPCO conference. “A chosen family member is not blood-related, but has become family to this patient [and] is sometimes more beneficial for this patient. [Their] biological families might have ostracized this patient or might not want to be involved with their care.”
Another important consideration is documenting a patient’s appropriate pronoun preference, which can make or break a quality outcome, Morrow stated. It’s also crucial to avoid using discriminatory language, he added.
Palliative providers must also navigate circumstances in which some transgender patients may not be comfortable disclosing information about their past medical experiences or their pronoun preferences, Morrow said. Inclusivity is a large component of providing improved palliative outcomes, he indicated.
“It’s important to make sure that we’re inclusive,” Morrow said. “When we think about gender identity, having certain phrases on your assessment about a transgender male or female, we want to make sure that if people don’t want to talk about it, they have that option, too. Another phrase that you can use would be, ‘I would like to be respectful, how would you like to be addressed?’ Or, ‘What name and pronouns would you like me or us to use?’”
