Project Respect: experiences of seriously ill LGBTQ+ patients and partners with their health care providers

Abstract

Background Discrimination against LGBTQ+ persons in healthcare creates barriers to serious illness care, including patients avoiding or delaying necessary care, providers disrespecting wishes of surrogates, and adverse outcomes for patients and families. Methods A cross-sectional mixed methods study using an online survey was used to determine the extent to which LGBTQ+ patients and spouses/partners/widows experienced disrespectful or inadequate care due to sexual orientation or gender identity. Results 290 LGBTQ+ patients and partners reported high levels of disrespectful and inadequate care, including 35.2% stating their provider was insensitive to them because of their identity; 30% reporting their provider was unaware of LGBTQ+ health needs; 23.1% feeling judged; 20.7% experiencing rudeness; 20.3% stating providers didn’t use their correct pronouns; and 19.7% reporting their treatment decisions were disregarded. Black and Hispanic patients were 2-4 times more likely than non-Hispanic white patients to report discrimination. Conclusions and Recommendations This study demonstrated high levels of disrespectful and inadequate care towards patients and partners due to being LGBTQ+, especially problematic for Black and Hispanic patients and those living in politically conservative regions. Recommendations include federal and state civil rights laws to prohibit LGBTQ+ discrimination, and institutional practices to address discrimination, including cultural sensitivity training for staff.

Communicating with LGBTQ+ persons at end of life: A case‐based analysis of interdisciplinary palliative clinician perspectives

“…Third, multi‐method investigations that keep the patient experience and their communication needs and priorities both visible and transparent is crucial. Though studies have explored the communications preferences of LGBTQ + patients with serious illness, researchers have also described troubling experiences of disrespectful care 8,9,43 . As LGBTQ + inclusion continues to be prioritized in systems, ongoing cross‐sectional and longitudinal research that measures and characterizes the communication experiences of LGBTQ + patients and families will be essential to identify barriers and facilitators to LGBTQ + equity and develop improved educational resources for clinicians.…”

“…14 First, the health system should continue to integrate SO/GI data collection throughout care delivery in alignment with multiorganization recommendations LGBTQ þ patients with serious illness, researchers have also described troubling experiences of disrespectful care. 8,9,43 As…”

My Partner Is My Family

“…Most health care clinicians were trained with a heteronormative lens, 1,12,13 and there is scant literature documenting how to interact with and support patients using an approach tailored specifically for lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients 14 . Emerging research has illustrated the positive impact LGBTQ awareness and communication training has on patient outcomes 15-18 ; however, many clinician education programs have yet to incorporate this training in their curricula.…”

Disparities in cancer care: A long way to go

“…Multiple studies indicate worse outcomes for SGM people of color, including in palliative care settings, in which Black and Hispanic SGM patients were two to four times more likely than their White SGM counterparts to report discrimination. 6 Current recommendations and best practices include collecting sexual orientation and gender identity data, 7,8 but current political environments focused on banning gender-affirming care may put this at risk, putting the movement to address SGM disparities to the test. Also problematic is using race as the primary characteristic around which we design efforts to effectively address cancer disparities; this is CA Cancer J Clin.…”