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Research Briefs

July 28, 2022

Fear, Discrimination Are Barriers to Advance Care Planning for Sexual and Gender Minority People

Advance care planning (ACP) can help support patients in making decisions and promoting better care at the end of life. But sexual and gender minority (SGM) patients are likely being left out of conversations around ACP, a new study suggests. Investigators from Brigham and Women’s Hospital were among a team that collected survey data from SGM and non-SGM participants and conducted qualitative telephone interviews with SGM participants across the country, asking them about ACP discussions with clinicians, expectations about these conversations, and their satisfaction with discussions. SGM participants described how fear and experiences of discrimination affected their selection of clinicians and expressed concern about whether their end-of-life preferences would be honored. Study results were recently published in JAMA Network Open.

“Discrimination in the health care system is an important barrier to advance care planning for sexual and gender minority people,” said lead and corresponding author Amanda Reich, PhD, MPH, an investigator at the Brigham’s Center for Surgery and Public Health. “Conversations about end-of-life care and advance care planning are deeply personal and sensitive. If we want to engage patients in these kinds of conversations, we need to ensure that they feel safe telling us what’s most important to them, such as who they want to have there at the end of life and who can speak on their behalf when they can no longer speak for themselves.”

“To date, ACP conversations have been developed around heteronormative models of caregivers and family,” said co-senior author Carey Candrian, PhD, an associate professor of Internal Medicine at University of Colorado School of Medicine. “We need to examine our processes, create a space for people whose lives don’t conform to outdated models, and ensure that these conversations work for all patients and all families.”

More than half of SGM people report experiencing some form of discrimination in health care, but how these experiences may influence end-of-life conversations — or contribute to a lack of them — has not been well understood. One of the reasons for this is that in health care settings, demographic data, including information about sexual orientation and gender identity (SOGI), are often incomplete or inaccurate. Efforts are currently underway across the Mass General Brigham health care system to help accurately fill in missing demographic data, including sexual orientation, gender identity, and pronouns. Since March, missing SOGI data for adult primary care patients has declined by an average of 4 percent across the enterprise. These secure data can only be accessed by patients and their healthcare proxies via their online patient portal, patients’ clinicians, clinical support staff, and quality improvement staff.

Accurately capturing demographic data is an important first step but helping to ensure that patients feel confident that their information is recorded and interpreted appropriately is critical, Reich and colleagues explain. In their study, they examined national survey results from 201 SGM people and 402 non-SGM people and conducted qualitative interviews with 25 SGM participants. In response to the question: “If you haven’t spoken about your wishes, why haven’t you?” SGM participants were significantly more likely to select, “I don’t see the need” and “I feel discriminated against” than non-SGM participants. The authors explored this further in interviews.

Three themes emerged from these interviews:

  • Fear of discrimination: Participants wanted to be assured that the information they shared about their SGM status would be managed in a safe and respectful way. Some expressed a desire to normalize the process of talking about partners, pronouns and more while others talked about a hesitation to disclose SGM status to clinicians.
  • Concerns about supporting medical preferences: Participants described concerns about whether their end-of-life medical preferences would be supported, both by their families and the health care system.
  • Discussions without clinicians: Most participants said they had discussed end-of-life preferences with their medical care decision makers but not with their clinician.

“Advance Care Planning is difficult for everyone, for reasons having to do with discomfort thinking about death, awkward conversations with one’s physician or family members, or unwillingness to pay for a special visit,” said co-senior author Joel Weissman, PhD, deputy director and chief scientific officer of the of the Brigham’s Center for Surgery and Public Health. “But what this study does is highlight the barriers to ACP for SGM patients over and above those faced by others. Understanding these barriers is the first step toward making care equitable for everyone.” 

The researchers acknowledge the limitations of their study, including that interview participants were mostly white and well-educated, and their views may not be generalizable to the larger population. The study’s strengths are its use of mixed methods — national survey data and qualitative interviews — its rigorous survey methodology and the broad range of ages and identities among the participants in the national survey.

The study data were collected between October 2020 and March 2021. The authors note that in the wake of the Supreme Court’s decision that overturned Roe v. Wade and concerns about the future of the legal status of same-sex marriage in the U.S., the fears and concerns expressed by SGM participants about advance care planning may be more pronounced.

“Now, perhaps more than ever, we need to bring more voices into the conversation around advance care planning than have been included before,” said Reich. “Clinicians have the opportunity to re-open how we talk about end-of-life care to be more inclusive and to understand why our patients may be fearful or hesitant to have these critical and deeply personal conversations.”

Disclosures: Reich reported receiving grants from Brigham and Women’s Hospital (National Institutes of Health grant No. R017034) during the conduct of the study. Co-author Julia Fleming reported personal fees from Brigham and Women’s Hospital during the conduct of the study. Co-author Priscilla Gazarian reported receiving grants from National Institute of Nursing Research during the conduct of the study. Co-author Adoma Manful reported receiving grants from the National Institutes of Health during the conduct of the study. Weissman reported receiving grants from the National Institutes of Health during the conduct of the study.

Funding: The work was supported by grant R017034 from the National Institutes of Health.

Paper cited: Reich AJ et al. “Advance Care Planning Experiences Among Sexual and Gender Minority People” JAMA Network Open DOI: 10.1001/jamanetworkopen.2022.22993