# Advance Care Planning (ACP) among Sexual and Gender Minority Individuals and Their Caregivers

> **NIH NIH R01** · BRIGHAM AND WOMEN'S HOSPITAL · 2020 · $49,459

## Abstract

Sexual and gender minority individuals (SGM) face discrimination, stigma, and health
disparities. Advance Care Planning (ACP) aims to ensure people receive medical care that is
consistent with their goals, preferences, and values as they become seriously ill. Our work in the
parent R01 is to study the trends, barriers, and facilitators to the uptake of ACP and its impact
on care. However, there exists scant research on ACP in the SGM community. This mixed-
methods supplemental proposal will build on our existing research to better understand ACP
among SGM adults and their caregivers.
Aim 1: To understand factors associated with Advance Care Planning (ACP) discussions
among transgender or gender non-binary Medicare beneficiaries using claims data.
 Using Fee-for-Service Medicare claims, we will utilize a previously validated diagnosis code
algorithm designed to identify transgender or gender non-binary beneficiaries to measure the
rate of billed ACP visits. We will examine uptake and use of this code during the years 2016-
2018, compared with other high needs populations.
Aim 2: To understand the needs, lived experiences, and challenges facing self-identified
sexual and gender minority (SGM) adults around ACP.
 Using a national polling survey, we will compare SGM adults with other respondents on a
limited number of ACP issues, including experience appointing healthcare proxies, and
completion of Advance Directives (ADs). A subset of SGM respondents will be re-contacted for
follow-up semi-structured interviews for a more in-depth qualitative exploration of advance care
planning with clinical providers and the role of family/partners/caregivers, legal next of kin
status, and perceptions of bias and/or discrimination.
 Identifying patterns around ACP rates and engagement among SGM adults will help inform
person-centered interventions to facilitate high quality ACP discussions among vulnerable or
underserved populations. This project will address a critical evidence gap in conducting
research to advance the science of caring for aging SGM adults.

## Key facts

- **NIH application ID:** 10093464
- **Project number:** 3R01NR017034-04S1
- **Recipient organization:** BRIGHAM AND WOMEN'S HOSPITAL
- **Principal Investigator:** Joel S. Weissman
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $49,459
- **Award type:** 3
- **Project period:** 2017-09-11 → 2022-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10093464

## Citation

> US National Institutes of Health, RePORTER application 10093464, Advance Care Planning (ACP) among Sexual and Gender Minority Individuals and Their Caregivers (3R01NR017034-04S1). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10093464. Licensed CC0.

---

*[NIH grants dataset](/datasets/nih-grants) · CC0 1.0*