Examining Racial Differences in the Informal Discussion of Advance Care Planning Among Older Adults: Application of the Andersen Model of Health Care Utilization

Abstract

Objectives:

The purpose of this study was to examine racial differences in the discussion of advance care planning among older adults using Andersen’s behavioral model of health care utilization.

Method:

This cross-sectional study utilized data from the 2018 National Health and Aging Trends Study. Weighted multivariable logistic regressions were used to predict advance care planning discussion (n = 1,326).

Results:

After accounting for predisposing, enabling, and need factors, Black older adults were less likely to discuss end-of-life care (odds ratio [OR] = .527) and medical power of attorney (OR = .531) compared with Whites. Hispanic older adults were also less likely to discuss end-of-life care (OR = .389) and power of attorney (OR = .384) compared with Whites.

Discussion:

These results point to significant racial disparities in advance care planning discussions among older adults and call for future examinations of cultural, historical, and systemic factors that could influence the discussion of advance care planning among this population.

Keywords

end of life advance care planning minorities Black Hispanic

Advance care planning is a means of providing a patient with full autonomy and control over their care at the end of life (National Hospice and Palliative Care Organization, 2020). Due to the unpredictable nature of sudden events such as car accidents, advance care planning is recommended at all stages of life (Smith, 2017). A living will, for example, allows a prospective patient to detail their wishes for health care options in the event that they fall ill or are in a condition where they are unable to make choices for themselves (Mayo Clinic, 2020), including the use of ventilator, artificial nutrition and hydration, and comfort care (National Institute on Aging, n.d.). In the event that a person is not able to make decisions for themselves, a medical power of attorney or durable power of attorney for health care is a directive that assigns another individual the power to make medical decisions on behalf of the patient (Marks et al., 2019).

Advance care planning refers both to the discussion of the end-of-life care wishes and documentation of those wishes using an advance directive, usually consisting of living will and power of attorney. It is critical to have these documents completed and available for family caregivers and health care providers because the patient’s documented wishes for end-of-life care can help to mitigate decision-making stresses they face in the event of a critical event such as terminal illness or permanent unconsciousness (Hickman & Douglas, 2010; Wachterman et al., 2016). Although advance care planning is recommended for all ages, older adults are most at risk of losing autonomy due to the prevalence of dementia (World Health Organization, 2019) and the natural cognitive decline associated with aging (Harada et al., 2013). Advance care planning may also protect an older adult from medical elder abuse, where practitioners overcharge or bill older adults for care that was not wanted or provided (National Institute on Aging, 2020).

Despite the importance of documenting end-of-life care preferences, adequate access to and knowledge of these planning tools are not equitable. Racial and ethnic minorities have a higher prevalence of chronic illnesses, a higher mortality rate, and a shorter life expectancy (Bharmal et al., 2012; Cunningham et al., 2017; Du & Xu, 2016); nevertheless, they have been found to have significantly lower rates of completing advance directives than their White counterparts. For example, among chronically ill older adults, Blacks and Latinos were less likely to have advance directives such as a living will than White older adults (Carr, 2011). White older adults are also more likely to discuss their end-of-life preferences and are more likely to have a power of attorney assigned (Bischoff et al., 2013). Prior research has also shown that minorities are disproportionately more likely to die in a hospital than in home and less likely to engage in advance care planning before death (Orlovic et al., 2019).

Prior research has suggested an extensive list of contributors to racial and ethnic disparities in advance care planning. Various structural as well as cultural barriers have been found including but not limited to socioeconomic status, health insurance, residential segregation, religious beliefs, geographic variation, racial discrimination, and distrust in the health care system (Carr, 2011; Charron-Chénier & Mueller, 2018; Dovidio et al., 2008; Priest & Williams, 2018). Although previous studies provide ample evidence of racial and ethnic disparities in advance care planning, few studies examined individuals’ use of advance care planning using a theoretical framework, particularly from the perspective of health service use. To fill such a gap, this study aims to employ a comprehensive theoretical model, Andersen’s behavioral model for health care utilization, to examine racial and ethnic differences in advance care planning among older adults.

The Andersen Model

The Andersen model was first introduced in the 1960s in an effort to understand how families use health care services and to define what equitable access to health care entails (Andersen, 1968). In this model, Andersen proposed that differences in people’s use of health care services may be explained by three different domains of population characteristics: predisposing, enabling, and need factors. Predisposing factors are sociodemographic in nature and include factors such as age, gender, race/ethnicity, education, marital status, or religion. Enabling factors are personal, family or community resources that provide means to access and use medical services and include factors such as income, health insurance, social support, and health care services in the region. Finally, need factors are perceived or evaluated health conditions and are the most immediate and critical factors in determining health care utilization (Andersen, 1968, 1995). This model posits a causal pathway: These three domains of population characteristics affect health service use, which affects health outcomes. These health outcomes then affect characteristics in each domain and health service use (Andersen, 1968).

The Current Study

In the current study, advance care planning is conceptualized not as a direct use of health care service but engagement in discussion on service use. This study examines whether there are racial differences in the likelihood to discuss end-of-life care and the likelihood to discuss medical power of attorney with others. While these are not direct forms of health care utilization, they can be good parameters for health care uses at one’s final days as previous studies suggest that discussion of advance care planning correlates with end-of-life service use (Bischoff et al., 2013; Sudore & Fried, 2010). Therefore, the Andersen model provides a framework to understand different types of factors—predisposing, enabling, and need—associated with advance care planning (Andersen & Newman, 2005; Andersen, 1968, 1995). A visual depiction of the conceptual framework for this study is provided in Figure 1.

Figure 1.

Conceptual framework.

Given the evidence showing there are persistent disparities in the health and health care utilization of minorities in the United States, the purpose of this study is to answer the following research question: To what extent do racial differences exist in the discussion of advance care planning among older adults? The hypotheses for this study are as follows:

Hypothesis 1: Non-Hispanic White older adults will be more likely to discuss end-of-life care than Black and Hispanic older adults after controlling for predisposing, enabling, and need factors.

Hypothesis 2: Non-Hispanic White older adults will be more likely to discuss power of attorney than Black and Hispanic older adults after controlling for predisposing, enabling, and need factors.

This approach is essential to understand the impact of race itself, going beyond the typical consideration of socioeconomic factors as contributors to racial disparities.

Method

Data Source

Data were derived from the 2018 National Health and Aging Trends Study (NHATS), which is an annual longitudinal survey of older adults in the United States. The study participants include Medicare beneficiaries who were 65 or older as of September 30, 2010 (Kasper & Freedman, 2019). The sample was replenished in Round 5, to study disability trends as well as individual trajectories (Kasper & Freedman, 2019). This study used only older adults initiated in Round 5, because income and education data are only collected at the initial entry into the study and the income and education data for participants in Round 1 would be too outdated (Kasper & Freedman, 2019). Therefore, income and education data from Round 5 were used, whereas data on all other variables were derived from the most recent available record, which was Round 8 in 2018. As such, we are examining baseline income and education on future advance care planning discussion. The NHATS also oversamples older adults aged 85 and older, as well as those who identify as being Black (Kasper & Freedman, 2019). The interview is conducted either directly with the sample person (SP) or with a proxy that is familiar with the SP (Kasper & Freedman, 2019).

Dependent variables

This study has two dependent variables, all representing discussions of advance care planning and considered as plans for health care utilization. The first outcome variable is end-of-life care, which determines whether an older adult has discussed end-of-life care with others. The SP or the proxy were asked “Have you (or SP) talked to anyone about the types of medical treatment you (or the SP) want or don’t want if you (or SP) become seriously ill in the future?” (NHATS, 2019, p. 1). If the respondent indicated discussion of end-of-life care, the variable was coded as 1 = Yes and if not, it was coded as 0 = No. The second outcome variable is power of attorney, which represents discussing power of attorney with others. The respondent was asked

Have you (or SP) made any legal arrangements for someone to make decisions about your (or the SP’s) medical care if you (or SP) become unable to make those decisions yourself (or /himself/herself)? This is sometimes called a durable power of attorney for healthcare. (NHATS, 2019, p. 2)

If the respondent reported discussion of power of attorney, the outcome was coded as 1 = Yes and if not, it was coded as 0 = No.

Independent variables

The explanatory variables were chosen a priori and guided by the Andersen model to represent the predisposing, enabling, and need factors that could influence advance care planning discussions.

Predisposing factors

Race was the main independent variable and considered as a predisposing factor. Black or African Americans were coded as 1, Hispanics were coded as 2, and Whites were coded as 0 to represent the reference group. All respondents who reported being Hispanic regardless of race or ethnicity were considered as Hispanic for the purpose of the study. Only Blacks, Hispanics, and Whites were considered because they represent the three biggest racial groups in the United States making up 12%, 18%, and 60% of the population, respectively (Kaiser Family Foundation, 2020). The sample size of older adults from other racial groups was also too small to make a meaningful analysis. Age and gender were also considered as predisposing factors as the prevalence of chronic illness has been found to increase with age, and some evidence suggests that men have worse health outcomes than women (Atella et al., 2019; Malmusi et al., 2012). Age was divided into three categories based on a similar study using the NHATS to examine advance care planning (Harrison et al., 2016): 65 to 74, 75 to 84, and 85+. Those aged 65 to 74 were used as a reference group to compare their outcome with those who were older (i.e., 75+). Gender was binary because NHATS only collects information on male or female. For the purpose of the study, females were used as the reference group to compare with men, who have been found to have worse health outcomes (Malmusi et al., 2012). The final predisposing factor was education, which was attained from the 2015 data set and categorized as having postsecondary education, having at least a high school diploma, and having less than a high school diploma.

Enabling factors

Enabling factors selected include living arrangement, parental status, social network, and income. Older adults were categorized as living alone, living with a spouse, or living with others (i.e., other people not including a spouse or partner). Older adults living alone were compared with the other groups, with the expectation that those living alone may be less likely discuss advance care planning (Garand et al., 2011). Parental status was categorized as having no children, having one to three children, and having more than three children, with those having no children as the reference group. These categories were determined based on the average number of children in a U.S. household from 1960 to 2019 (Duffin, 2019). Social network was categorized based on the number of people in an older adult’s social network; none, one to two and three or more. Social network members included biological family, step and adopted family, friends, neighbors, religious leaders, medical practitioners, roommates, social services provided, and others identified by the SP (NHATS, 2019). Finally, income was categorized into high-, middle-, and low-income categories. Older adults with income less than US$30,000 were considered low income, those with income between US$30,000 and US$60,000 middle income, and those with income greater than US$60,000 high income. These income allocations were determined based on the basic needs of a retired older adult with no dependents (Senior Living, 2019).

Need factors

Need factors were determined based on measures that could affect the perception of needing to discuss advance care planning. As such, four variables—overall health, number of chronic illnesses, having had a heart attack in the past year, and having had a stroke in the past year—were considered. Self-perceived, overall health was categorized into poor, fair, and good health as in a similar study by Johnson and colleagues (2016). Number of chronic illnesses were categorized as having none, one to four, and five to eight illnesses. These categorizations were determined based on the average number of chronic illnesses an older adult has (National Institute on Aging, 2017). Having had a heart attack or stroke in the past year was coded simply as 1 for yes and 0 for no.

Statistical analysis

This analysis focused on older adults 65 and older in Round 8 of the NHATS study who also reported income and education data in Round 5. To account for the complex sampling design of the NHATS and to adjust for nonresponse bias (DeMatteis et al., 2019), analytic weights were used for statistical analysis. Descriptive statistics were run to provide background information of the sample. To predict the likelihood of discussing advance care planning as conceptualized in the study, weighted multivariable logistic regression models were used while controlling for predisposing, enabling, and need factors. All analyses were conducted using SPSS, Version 26; https://www.ibm.com/support/pages/ibm-spss-statistics-26-documentation#en.

Results

Descriptive Statistics

A total of 1,326 older adults met the criteria for the study. In terms of predisposing factors, a little more than half of the sample were female (53.1%) and close to half were 65 to 74 years of age (44.9%), whereas the vast majority of them were non-Hispanic Whites (71.9%). For enabling factors, close to half of the sample lived with a spouse or partner (47.1%), and the majority of them had one to three children (61.5%) and had at least one to two people in their social network (61.5%). Close to half of the sample had completed at least high school (49.4%), and more than half had an income lower than US$60,000 (56.8%). For need factors, the vast majority of the sample reported having good overall health (77.8%), no heart attacks in the past year (98.0%), no strokes in the past year (97.9%), and at least one to four number of chronic illnesses (79.7%). Univariate results are provided in Table 1.

Table 1.

Descriptive Statistics (n = 1,326).

Variable	Values	Sample size	% within sample	% who have discussed end-of-life care
Gender	Male	622	46.9	56.1
Gender	Female	704	53.1	66.9
Race	Non-Hispanic White	954	71.9	68.7
	Non-Hispanic Black	280	21.1	47.4
	Hispanic	92	6.9	35.3
Age	65–74	596	44.9	62.4
	75–84	513	38.7	64.8
	85+	217	16.4	69.8
Education	Postsecondary education	447	33.7	74.1
	High school	655	49.4	61.3
	Less than high school	224	16.9	41.4
Living arrangement	Alone	456	34.4	66.9
	With spouse or partner	625	47.1	62.9
	With others	245	18.5	60.4
Parental status	No children	103	7.8	65.6
	One to three children	816	61.5	64.3
	More than three children	407	30.7	61.9
Social network	None	45	3.4	30.7
	One to two	759	57.2	61.6
	Three or more	522	39.4	69.5
Income	High income	405	30.5	73.7
	Moderate income	377	28.4	62.2
	Low income	544	28.4	53.2
Overall health	Good health	1,032	77.8	64.9
	Fair health	229	17.3	58.3
	Poor health	65	4.9	60.6
Had heart attack	Yes	27	2.0	48.3
Had heart attack	No	1,299	98.0	64.0
Had stroke	Yes	28	2.1	70.4
Had stroke	No	1,298	97.9	63.6
Number of chronic illnesses	None	200	15.1	56.0
	One to four	1,057	79.7	65.1
	Five to eight	69	5.2	67.5

For discussion of advance care planning, significant differences were found across all racial groups. In this sample of older adults, Whites (68.7%) were more likely to have discussed end-of-life care than Blacks (47.4%) and Hispanics (35.3%), and more likely to have discussed power of attorney (56.3%) than Blacks (31.1%) and Hispanics (21.8%). Bivariate results, including those from other covariates, are provided in Table 1.

Multivariable Logistic Regression Results

Blacks were less likely to have discussed end-of-life care (odds ratio [OR] = .527, confidence interval [CI] = [.525, .574], p = .000) and less likely to have discussed power of attorney (OR = .531, CI = [.528, .533], p = .000) than Whites. Hispanics were less likely to have discussed end-of-life care (OR = .389, CI = [.387, .390], p = .000) and less likely to have discussed power of attorney (OR = .384, CI = [.382, .386], p = .000) than Whites. The multivariable logistic regression results, including those from other covariates, are provided in Table 2.

Table 2.

Multivariable Logistic Regression Results (n = 1,326).

Variable	Values	Model 1: OR and 95% CIEnd-of-life care	Model 2: OR and 95% CIPower of attorney
Gender	Male	0.573 (0.572–0.574)*	0.922 (0.920–0.924)*
Race	Non-Hispanic Black	0.527 (0.525–0.574)*	0.531 (0.528–0.533)*
Race	Hispanic	0.389 (0.387–0.390)*	0.384 (0.382–0.386)*
Age	75–84	1.195 (1.192–1.98)*	1.656 (1.652–1.660)*
Age	85+	1.659 (1.652–1.667)*	3.662 (3.646–3.679)*
Education	High school	0.589 (0.587–0.590)*	0.522 (0.520–0.523)*
Education	Less than high school	0.387 (0.385–0.389)*	0.473 (0.471–0.475)*
Living arrangement	With spouse or partner	0.678 (0.676–0.680)*	0.648 (0.646–0.650)*
Living arrangement	With others	0.956 (0.953–0.960)*	0.774 (0.771–0.777)*
Parental status	One to three children	0.979 (0.975–0.984)*	1.087 (1.082–1.092)*
Parental status	More than three children	1.131 (1.126–1.137)*	1.088 (1.083–1. 093)*
Social network	One to two	3.270 (3.248–3.292)*	2.067 (2.053–2.081)*
Social network	Three or more	3.334 (3.312–3.356)*	2.912 (2.892–2.932)*
Education	High school	0.589 (0.587–0.590)*	0.522 (0.520–0.523)*
Education	Less than high school	0.387 (0.385–0.389)*	0.473 (0.471–0.475)*
Income	Moderate income	0.598 (0.597–0.600)*	0.555 (0.553–0.557)*
Income	Low income	0.445 (0.443–0.446)*	0.352 (0.350–0.353)*
Overall health	Good health	0.712 (0.708–0.717)*	1.068 (1.061–1.074)*
Overall health	Fair health	0.734 (0.729–0.739)*	1.049 (1.042–1.056)*
Had heart attack	Yes	0.635 (0.630–0.641)*	1.298 (1.286–1.310)*
Had stroke	Yes	1.339 (1.327–1.352)*	0.943 (0.935–0.951)*
Number of chronic illnesses	One to four	1.432 (1.428–1.437)*	1.066 (1.062–1.069)*
Number of chronic illnesses	Five to eight	1.976 (1.964–1.989)*	0.884 (0.878–0.889)*

Note. OR = odds ratio; CI = confidence interval.

p = .000.

Discussion

The purpose of this study was to examine racial differences in the discussion of advance care planning among older adults, using the Andersen behavioral model of health care utilization in a nationally representative sample of older adults. After adjusting for predisposing, enabling, and need factors, we found that Black and Hispanic older adults were significantly less likely to engage in the discussion of advance care planning compared with White older adults, confirming the two study hypotheses.

These results echo the findings from previous studies on racial differences in advance care planning (Bischoff et al., 2013; Carr, 2011; Orlovic et al., 2019; Wang et al., 2019). A number of reasons have been proposed to explain these disparities, including socioeconomic factors, racial discrimination, differences in the availability and quality of health insurance, geographic variation of end-of-life facilities, religious beliefs, and an overall mistrust of the health care system (Carr, 2011; Charron-Chénier & Mueller, 2018; Dovidio et al., 2008; Priest & Williams, 2018). Lower health literacy and lack of knowledge of advance care planning have also been proposed as possible causes of these disparities (Kermel-Schiffman & Werner, 2017). Our results, however, imply that even with access to education, high income, and social support, minority older adults still had significantly less discussion of advance care planning than Whites. All these aggregate findings suggest the need to expand the investigation beyond sociodemographic and socioeconomic contributors and examine specific factors in Hispanic and Black cultures that may serve as barriers to advance care planning discussion, while accounting for historical and systemic influences as well.

Mistrust in the health care system has often been highlighted as a major impediment in the advance care planning and end-of-life care among minority groups. For example, historical events, such as the Tuskegee syphilis experiment, invoke a sense of mistreatment by the health care system and have led to medical racism in the United States (Alsan et al., 2020; McAfee et al., 2019; National Institute of Medicine, 2014). Some studies have even found that Blacks believe that they would receive worse medical treatment and experience adverse outcomes if they engage in advance care planning (Clark et al., 2018; McAfee et al., 2019). Such beliefs may explain in part prior research findings on racial minorities’ stronger preference for life-sustaining treatments at the end of life than Whites even if it means poorer quality of life due to oftentimes aggressive, futile measures (Johnson et al., 2010; Orlovic et al., 2019). As such, end-of-life planning may simply not be in alignment with the wishes of racial minority older adults, who may be deterred by the historic maltreatment from the health care system and have stronger desires to pursue all possible treatments for their medical conditions.

A unique cultural consideration for Hispanics is the concept of familioso, which prioritizes group decisions in health treatments and involves a steady network of family members coming together to provide advice and encouragement (Calzada et al., 2013). Hispanics have also been found to have a cultural preference for extended living arrangements and family closeness, resulting in a large number of people in their social network (Campos et al., 2014). The results of this study show that the number of people in a person’s social network is actually the strongest predictor of advance care planning discussions, but Hispanics still had a lesser likelihood of discussing advance care planning even after accounting for that factor. Instead, the results of this study may reflect the collective decision-making prioritized among Hispanics (Clark et al., 2018), which may allow for family input that may include advice against advance care planning. Family members are more likely to encourage life-prolonging treatment and preparing for end of life may therefore be seen as a way of “giving up” to the family (Baker & Gallagher, 2017).

Overall, these results reveal great disparities in advance care planning discussions between Whites and minorities even after predisposing, enabling, and need factors were accounted for. This points to the factor of race itself as a possible explanation of these differences with possible influences from historic, cultural, and systemic factors that innately impact the desire to engage in advance care planning discussions. In designing interventions to increase advance care planning among minority older adults, it is critical to acknowledge and work to dismantle the systematic racism and resulting mistrust in health care system: Evidence shows that reducing medical mistrust increases health care utilization for minorities (Arnett et al., 2016). Increasing access to health insurance of quality for all racial groups may also help to expand end-of-life choices for minorities, who could pursue further treatment or seek alternatives such as home care (Mack et al., 2010).

Practitioners may also benefit from administering tools such as the Hospice Philosophy Scale, which measures attitudes about end-of-life preferences and has been validated (Van Dussen et al., 2020). The use of technology to engage minority populations in advance care planning has also been explored, with researchers finding that a simple website allowing older adults to document their wishes increased advance care planning (Sudore et al., 2014). This removes the direct aspect of having to engage with a lawyer or a medical practitioner in the actual care documentation process. It is also important to consider how cultural norms and family influences may cause advance care planning to be seen as a way of giving up (Baker & Gallagher, 2017). This may require a rebranding of advance care planning as an activity that should occur at all ages, in all health conditions, to normalize the idea of planning for the future and emphasize the importance of autonomy in decision-making (National Institute of Medicine, 2014).

Limitations

Several limitations exist within this study, including the cross-sectional nature of the design, which limits the ability to establish cause and effect. Because NHATS relies on self-reporting from participants and some questions prompt for information up to 12 months prior, the potential for recall and social desirability bias exist. NHATS also comprised Medicare beneficiaries alone and therefore excludes older adults who are uninsured, undocumented, using private insurance or self-pay. Finally, because the information on income and education information was collected during a participant’s first interview only, the income and education data used for this study capture values from 3 years prior to the time other information used in this study was collected. Therefore, the income and education might have significantly changed during the time frame.

Despite these limitations, this study has strengths. It used a nationally representative sample of older adults from NHATS data. This study is also unique in that it employs a theoretical framework that has been proven to influence health care utilization, adding a theory-based examination to the existing body of research on advance care planning.

Conclusion

Advance care planning is an important activity that allows autonomy in situations where the ability to make decisions for one-self may be lost. Guided by the Andersen behavioral model of health care utilization, this study aimed to examine whether racial disparities existed in the discussion of advance care planning among older adults after accounting for predisposing, enabling, and need factors. The results indicate great disparities between White and minority older adults, with minorities significantly less likely to have discussed end-of-life care and less likely to have discussed power of attorney compared with White older adults. Interventions to improve discussions of advance care planning among minority groups should consider the historic, cultural, and systemic factors that may influence the desire to engage in these discussions.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Zainab Suntai

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