To the Editor:
Advance directives (ADs) (e.g., living will) are documents that allow individuals to detail medical care and treatment they do or do not wish to receive.1,2 Completion of ADs and/or designating a healthcare proxy (i.e., durable power of attorney for healthcare [DPOAH]) has been associated with electing to have less aggressive medical treatment (i.e., resuscitation, utilization of a feeding tube), fewer hospital deaths, and increased use of hospice or palliative care.3 These forms of documentation ensure that the individual’s future care needs are met, particularly in cases when the person is incapacitated.4
Few studies have investigated factors that influence sexual minority (SM) individuals—and those in the larger sexual and gender minority (SGM) population—in completing ADs.5,6 A recent study found that SM men with a higher socioeconomic status had a higher likelihood of completing legal documentation compared to those who were younger, single or in a nonlegalized relationship, of a racial/ethnic minority background, and lacked primary care access.7 Similarly, a study conducted among older SGM adults in the Southern U.S. found that those who had designated a healthcare proxy were more likely to be married, had larger social networks, and were older.6 Noting the variability in factors that influence completion of ADs, continued investigation is needed to understand factors that influence completion of ADs within a broader, more diverse SM population.
Considering the significant racial disparities in AD completion, the inclusion of an SM identity could present additional impediments to completing ADs. The aim of this study is to investigate racial differences in ADs and DPOAH documentation among a sample of White and Black, older lesbian and gay adults. We hypothesize that White lesbian and gay adults will have higher odds of having a living will and DPOAH in comparison to Black lesbian and gay adults.
Methods
We conducted a cross-sectional study design via an online survey (January 2022 to May 2023) focused on older gay and lesbian adults’ knowledge, actions, and discussions about future healthcare wishes and their healthcare experiences. We recruited participants by disseminating study information (i.e., electronic flyer with survey link) to professional open forums and web-sites (e.g., GSA Connect), an LGBT centered magazine (Outword Magazine), and community organizations across the U.S. that serve older adults and/or the SGM population (SAGE: Advocacy and Services for LGBT Elders). Cloud Research, a third-party research company, was additionally utilized during the last three months of recruitment to meet the target sample size of 200 participants.
Inclusion criteria for this study were: 1) being 50 years of age or older; 2) identifying as being lesbian, gay, or same-gender loving; 3) identifying racially as Black or White; 4) residing in the United States; 5) speaking and reading English; and 6) having access to the internet. Participants received monetary compensation for completing the survey. Given that the SM population is not a monolith, we choose to focus on specific groups within this population and implore that future studies investigate these issues among other SM groups.
The main outcomes of interest were a completion of a living will and a DPOAH. Participants were asked separately if they have completed a living will and assigned a DPOAH. Each question was coded as (1) yes and (0) no. Race included those who reported being Black or White and was coded (0) and (1) with Black being the reference category. Other demographic variables included in the analysis were age (continuous), gender identity (binary), education level, income, living arrangement, relationship status, employment, having health insurance coverage, and caregiver status. Health-related variables included were number of health conditions, self-rated health, and access to healthcare services.
Descriptive statistics summarized the sample demographics. Chi-square and t-tests were conducted to determine differences in ACP documentation among all demographics and health-related variables. Multivariable logistic regressions were conducted to examine racial differences in documentation, while controlling for all other sociodemographic variables.
The University of Southern California’s Institutional Review Board provided exempt status to this study (UP-21-00827).
Results
A total of 281 participants completed the survey; 77% of the participants were recruited through online professional websites, Outword Magazine, and community organizations and 23% of participants were recruited using Cloud Research. The average age of respondents was 57 years old (SD = 6.04). About half (52%) the respondents identified as being White and 55% identified as being a man. Forty-two percent of the respondents were living with a partner or spouse and 46% were employed full-time. Nearly all (96%) respondents had some type of health insurance with 80% having access to healthcare services. Close to 80% of the respondents reported currently being a caregiver and 38% had one health condition (Table 1).
Table 1.
Sample Demographics and Bivariate Analysis Results for ACP Documentation
| N = 281 | Living Will Percentage That Reported “Yes” |
DPOAH Percentage That Reported “Yes” |
|||
|---|---|---|---|---|---|
| Age (M) | 57.1 | P = 0.03 | P = 0.05 | ||
| Race | P < 0.05 | P < 0.05 | |||
| Black | 47.3 | 35.4 | 33.3 | ||
| White | 52.7 | 64.6 | 66.7 | ||
| Gender Identity (binary) | |||||
| Woman | 44.1 | 48.3 | 47.6 | ||
| Man | 55.9 | 51.7 | 52.4 | ||
| Education level | P = 0.01 | P = 0.01 | |||
| Less than 12th grade | 2.9 | 4.6 | 3.8 | ||
| High school graduate/GED | 12.2 | 10.1 | 10.7 | ||
| Trade or vocational training | 3.2 | 3.9 | 2.3 | ||
| Some college | 17.2 | 13.2 | 17.6 | ||
| Associates degree | 12.9 | 8.5 | 6.9 | ||
| Bachelor’s degree | 33.3 | 34.1 | 32.8 | ||
| Graduate/professional degree | 18.3 | 25.6 | 25.9 | ||
| Relationship status | P = 0.04 | ||||
| Single | 35.2 | 29.2 | 28.0 | ||
| Partnered | 26.3 | 24.6 | 24.2 | ||
| Married | 25.3 | 32.3 | 32.6 | ||
| Divorced/separated | 11.4 | 11.6 | 12.9 | ||
| Widowed | 1.8 | 2.3 | 2.3 | ||
| Living arrangement | P = 0.03 | ||||
| Living independently | 36.7 | 33.1 | 29.5 | ||
| Living w/ partner or spouse | 42.8 | 51.2 | 51.2 | ||
| Living w/ family | 11.9 | 7.8 | 8.5 | ||
| Living w/ a friend or friends | 4.3 | 5.5 | 5.4 | ||
| Living in assisted living | 2.5 | 2.4 | 3.1 | ||
| Unstable living situation | 1.8 | 0.0 | 2.3 | ||
| Current employment status | P = 0.01 | ||||
| Unemployed | 7.9 | 6.2 | 6.9 | ||
| Full-time | 46.2 | 48.8 | 48.8 | ||
| Part-time | 13.6 | 10.1 | 8.4 | ||
| Self-employed | 7.2 | 3.1 | 6.9 | ||
| Retired | 25.1 | 31.8 | 29.0 | ||
| Income | P = 0.004 | P < 0.05 | |||
| Less than $30,000 | 14.6 | 10.7 | 9.8 | ||
| $30,000–$49,000 | 24.6 | 20.8 | 15.9 | ||
| $50,000–$69,000 | 24.2 | 20.0 | 23.5 | ||
| $70,000–$99,000 | 21.7 | 26.2 | 27.3 | ||
| $100,000 or more | 14.9 | 22.3 | 23.5 | ||
| Any health insurance | |||||
| Yes | 96.4 | 97.7 | 97.7 | ||
| No | 3.6 | 2.3 | 2.3 | ||
| Current caregiver | P = 0.02 | ||||
| Yes | 21.3 | 26.9 | 23.5 | ||
| No | 78.7 | 73.1 | 76.5 | ||
| Self-rated health | |||||
| Poor | 4.7 | 4.6 | 6.1 | ||
| Fair | 23.0 | 20.8 | 22.0 | ||
| Good | 34.5 | 36.2 | 31.8 | ||
| Very good | 25.2 | 26.1 | 26.5 | ||
| Excellent | 12.6 | 12.3 | 13.6 | ||
| Access to healthcare services | |||||
| Yes | 80.6 | 81.5 | 80.3 | ||
| No | 19.4 | 18.5 | 19.7 | ||
| Number of health conditions | |||||
| No condition | 32.7 | 32.6 | 31.3 | ||
| One condition | 37.8 | 31.8 | 32.8 | ||
| Two or more conditions | 29.5 | 35.6 | 35.9 |
The p values are voided to easily identify the statistically significant results.
Table 1 displays the results of the bivariate analysis for differences in living will completion among all demographic and health-related variables. Regression analysis results showed that White respondents had more than 3 times higher odds of having completed a living will compared to Black respondents (aOR = 3.11; 95% CI = 1.64, 5.88). Those in the highest income group ($100,000 or more) had over 5 times higher odds of having completed a living will in comparison to those in the lowest income group (less than $30,000) (aOR = 5.35; 95% CI = 1.38, 20.77). Respondents reporting two or more health conditions had more than 3 times higher odds of having completed a living will in comparison to those without health conditions (aOR = 3.31; 95% CI = 1.37, 7.96). There were no significant differences in completing a living will by the remaining sociodemographic and health-related variables.
Results for the bivariate analysis for differences in DPOAH completion among all demographic and health-related variables is shown in Table 1. In the regression model, White respondents had more than 3 times higher odds of having completed a DPOAH compared to Black respondents (aOR = 3.38; 95% CI = 1.79, 6.37). Those with an income of $100,000 or more had over 7 times higher odds of having completed a DPOAH compared to those with an income of less than $30,000 (aOR = 7.84; 95% CI = 1.99, 30.81). Respondents who reported having two or more health conditions had more than 3 times higher odds of having completed a DPOAH (aOR = 3.08; 95% CI= 1.28, 7.40). No other significant differences were found in the remaining sociodemographic and health-related variables for completing a DPOAH.
Comment
The findings from this study add to the limited literature on factors that influence completion of ACP documentation within the SM population. Outcomes from this work demonstrated that those with higher income levels and managing more than one health condition was associated with completing a living will and DPOAH. Similar results were found in the general population indicating the potential critical impact that income and health has on how one plans for future care.
Most notably, the findings from this study highlight the persistent racial disparities in completion of ADs and designation of healthcare proxy among this sample of older lesbian and gay adults. These findings parallel previous literature in that those who identify as racial minorities have lower odds of completing ADs. Reasons for these disparities in AD completion have been linked to lack of knowledge about ADs and mistrust of the healthcare system.8 For Black lesbian and gay individuals, these disparities may be further augmented by the lack of access to inclusive health services9 and the compounding concern of experiencing multiple forms of discrimination.10 Overall, the presence of these inequities highlights the longstanding systemic issues within the healthcare system and service delivery for those within the SM population. There is a need for future policies to be enacted to improve engagement in and planning for end-of-life care.
Disclosures and Acknowledgments
This work was supported by the National Institute on Aging [R36AG075198]. The National Institute on Aging had no role in the design and conduct of the study. This work was supported by grants UL1TR001855 (REDCap) from the National Center for Advancing Translational Science (NCATS) of the U.S. National Institutes of Health. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The authors have no conflicts of interest relevant to this article to disclose.
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