“It Made Me Feel Like I Didn’t Know My Own Body”: Patient-Provider Relationships,LGBTQ+ Identity,and End-of-Life Discussions

Abstract

Purpose:

LGBTQ+ individuals experience multiple challenges receiving quality care at the end of life, such as lack of confidence in the healthcare system to address their needs and lack of knowledge about advance care planning. Important gaps remain about the needs of LGBTQ+ individuals in the provider-patient relationship and how critical discussions about the end of life occur or do not occur in that relationship. The purpose of this study is to explore patients’ narratives of their relationship with their provider and their experiences discussing end-of-life care with their providers, among patients who do and do not identify as LGBTQ+.

Methods:

Twenty-nine attendants of an event devoted to LGBTQ+ health, 15 of which identified as LGBTQ+, completed an altered version of the CAHPS® Patient Narrative Elicitation Protocol. We used inductive content analysis to qualitatively analyze the data.

Results:

Respondents described wanting to be heard, finding safety and trust, and valuing competency in their relationship with their provider. Respondents who identified as LGBTQ+ additionally 1) valued providers who avoided making assumptions, 2) looked for cues of safety to indicate they would be accepted by the provider, and 3) sought providers competent in LGBTQ+ care needs. Few respondents had discussed end-of-life care with their provider, although some assumed that their provider may or may not be able to meet their needs based on aspects of their provider-patient relationship.

Conclusions:

Strengthening patient-provider relationships may help improve the care of LGBTQ+ populations, particularly for the end of life.