A lack of information about the experience of sexual and gender minorities (SGM) in advance care planning (ACP) interested a group of researchers, who hoped to learn more about their discrimination concerns.

The researchers sought out to learn more about SGM people’s willingness to engage in ACP, including appointing a medical decision maker (MDM) and having end of life (EOL) discussions with their MDM. Their findings were published in JAMA Network Open.

The researchers conducted a qualitative study involving interviews with 201 SGM people and 402 non-SGM people. From the interviews, the researchers identified 3 main themes which “captured the impact of discrimination on ACP encountered and beliefs about the usefulness of ACP documents for future care.” The themes included the following:

Continue Reading

  • Fear of discrimination limits some participants’ disclosure of their SGM status and affects their selection of clinicians
  • Concern about whether EOL preferences and their chosen MDMs would be supported
  • Most discussions about EOL preference occurred outside of clinical settings

The researchers found that most of the SGM participants had already engaged in some conversations about EOL plans — but most of the conversations occurred away from the clinical setting and clinicians.

“Clinicians should acknowledge that many SGM patients have already thought about preferences and determine how MDMs should be involved and included in planning processes using language that gives SGM patients and those who care for them space to answer in a way that fits them and their circumstances,” the researchers wrote.

They also noted that the clinical environment should have zero-tolerance for discrimination and a commitment to ongoing education and training on issues related to EOL planning for SGM people.

The study’s limitations included a survey instrument that limited the gender item to a female and male binary, which may not have captured all the diverse identities within the SGM spectrum. Additionally, the survey participants who responded to follow-up interview requests were predominantly white and had high education levels.


Reich AJ, Perez S, Gazarian P, et al. Advance care planning experiences among sexual and gender minority people. JAMA Netw Open.2022;5(7):e2222993. doi:10.1001/jamanetworkopen.2022.22993