Abstract
Background and Aims
Advance care planning (ACP) is recommended as part of usual care for patients with cirrhosis, but it is uncommonly performed. Little data exist to assess baseline rates of ACP that can be targeted for intervention development and quality improvement initiatives. Therefore, we evaluated advance directive completion among adults with decompensated cirrhosis across three large academic centers serving racially and ethnically diverse populations and described patient factors associated with completion.
Methods
We conducted a secondary analysis of the UC Health Care Planning Study. All patients were identified using a validated, electronic health record algorithm. Our primary outcome was completion of an advance healthcare directive or physician order for life-sustaining treatment. We compared demographics and advance directive completion between patients with decompensated cirrhosis and other advanced chronic illnesses. Bivariate analysis and multivariable logistic regression were performed to assess demographic factors associated with advance directive completion rates.
Results
Of 8707 patients with advanced chronic illnesses, 539 (6%) had decompensated cirrhosis. Patients with decompensated cirrhosis were much less likely to have an advance directive compared to patients with other advanced conditions (22% vs. 34%, p < 0.001). In multivariable analysis, older age (odds ratio [OR]: 1.03 per year, 95% confidence interval [CI]: 1.01–1.05) and Hispanic race/ethnicity (OR: 0.42, 95% CI 0.21–0.84) were significantly associated with advance directive completion.
Conclusion
Advance directive completion is low among adults with decompensated cirrhosis. Tailored programs are needed to improve advance directive completion among younger and Hispanic patients with decompensated cirrhosis.
Keywords: Cirrhosis, Quality, Advance care planning, Disparities, Equity
Background
Advance care planning (ACP), which involves iterative discussions between clinicians, patients, and their families regarding prognosis, goals, and values to guide care, including at the end of life, is now recommended as part of usual care for patients with cirrhosis [1]. Liver-decompensating events, such as ascites, variceal hemorrhage, and hepatic encephalopathy, often lead to a significant reduction in life expectancy [2] and impairments in quality of life [3]. These clinical complications underscore the importance of ACP and represent opportunities to broach such discussions. However, ACP is rarely performed despite it being valued by patients with decompensated cirrhosis, their families, and gastroenterology teams, and reimbursed by most insurers [4–6]. ACP can enhance patient and family satisfaction at the end of life, reduce receipt of unwanted healthcare, and maximize healthcare value [4–6].
Development of interventions to improve ACP is hampered by limited evaluation of ACP among patients with decompensated cirrhosis. Descriptions of ACP discussions and completion of advance directives—the sentinel document that captures patients’ wishes concerning end-of-life care and appoints a healthcare agent should the patient be unable to make decisions—come mainly from single-site studies. This limits insights into patient factors that might be targeted or prioritized for intervention. Using data collected in a large, multi-site, population-based trial, this study aimed to describe the proportion of ambulatory patients with decompensated cirrhosis who have an advance directive and patient factors related to having an advance directive. Furthermore, we explored how advance directive completion rates for patients with decompensated cirrhosis compare with other serious conditions. We hypothesized that patients with decompensated cirrhosis would be less likely than those with other serious conditions to have advance directives and that White, older, and socioeconomically advantaged populations would be more likely to complete advance directives versus their counterparts, consistent with prior work [7].
Methods
Data Source
This is a secondary analysis of baseline data from the UC Health Care Planning study, a multi-site trial investigating the effects of ACP interventions in adult patients with advanced chronic illnesses who received primary care at University of California clinics (NCT04012749) [8]. This trial included adult patients (age ≥ 18) who were seen at least twice by a primary care clinician within the past 12 months. A validated, electronic health record algorithm used encounter and clinical data to identify patients with six advanced illnesses, including cancer, heart failure, chronic obstructive pulmonary disease, decompensated cirrhosis, renal failure, amyotrophic lateral sclerosis, and vulnerable elders, adults aged 75 or older with at least one serious illness. These conditions were chosen based on the definition of serious illness, which is an at-risk medical diagnosis linked with advanced age or a level of severity such that ACP would be a priority, defined as (1) poor short-term survival prognosis, (2) developing incapacity, (3) worsening functional status, or (4) high burden of disease (causing excessive suffering, which may be related to healthcare utilization). Chart abstraction of 306 patients across the three health systems in the study confirmed that 301 (98%) met this criterion [8]. Patients with decompensated cirrhosis were identified by the presence of cirrhosis, along with evidence of hepatic decompensation or MELD score ≥ 18, using the most recently available laboratory parameters. (Supplementary Table 1).
Variables of Interest
Although ACP is a multicomponent construct, in the electronic health record across sites, we had access to advance directive documentation as the primary outcome, defined as the presence of a healthcare advance directive or a Physician Order for Life-Sustaining Treatment (POLST) form in the electronic health record. Prior validation of administrative data against medical abstraction demonstrated an accuracy rate of greater than 95% in capturing this information across the three University of California sites. Other variables of interest included demographics: age, gender, race, ethnicity, primary language spoken at home, insurance (commercial, Medicare, Medicaid, managed care, or other), social vulnerability index (SVI), and site of study. We combined race and ethnicity data to capture the following groups: American Indian or Native American, Asian, non-Hispanic Black or African American, Hispanic, Multiple Races, Native Hawaiian or Pacific Islander, Other Race, Patient Refused/Unknown/Missing, and non-Hispanic White or Caucasian. Patients were followed for two years to identify deaths. SVI is an index measure that combines 15 US Consensus Variables (such as income, educational level, and transportation access) and is scored from 0 to 1, with higher scores indicating greater vulnerability. Home addresses were geocoded using ArcGIS Pro to obtain geographic coordinates, which were then binned into census tracts [9, 10].
Statistical Analysis
We first compared demographics, advance directive completion rates, and 2-year mortality between patients with decompensated cirrhosis and those with other advanced chronic illnesses. To facilitate comparisons, spoken language was condensed into three categories (English, Spanish, and Other) for these analyses. To identify factors associated with advance directive completion among patients with decompensated cirrhosis, we conducted bivariate analysis, followed by multivariable logistic regression. To ensure model fit, an “Other” race and ethnicity category combines American Indian or Native American, Multiple Races, Other Race, and Patient Refused/Unknown groups. Patients with missing SVI data (n = 44, 8%) were excluded from this analysis. Since a high proportion of patients in our sample were Hispanic (38%) and/or Spanish-speaking (20%), we sought to understand the relationship between race/ethnicity, language, and completion of advance directives. To assess this, we developed an additional logistic regression model that included an interaction term grouping race/ethnicity and language. We reported expected probabilities of advance directive completion and assessed whether differences in expected probabilities between all race/ethnicity and language groups were statistically significant. All other hypothesis testing was conducted using two-sided t-tests and Pearson χ2 tests. We used a cutoff of p < 0.05 to assess statistical significance. All analyses were performed in STATA 14.2 (College Station, TX).
Results
Characteristics of Cohort
Of 8707 patients with advanced chronic illnesses, 539 (6%) had decompensated cirrhosis. Patients with decompensated cirrhosis were racially and ethnically diverse, had a mean age of 62.5 (standard deviation [SD]: 12.8, range: 22–90) years, and 25% spoke a language other than English at home. Most were insured by Medicaid (34%) and Medicare (30%). The mean SVI was 0.46 (SD: 0.29). Patients with decompensated cirrhosis, compared to those with other advanced conditions, were younger and were more likely to be male, Hispanic, and insured with Medicaid. Patients with decompensated cirrhosis were significantly more likely to live in a vulnerable area compared to patients with other advanced conditions (0.46 vs. 0.37, p < 0.001). Two-year mortality was similar between patients with decompensated cirrhosis and the other serious illnesses (18% vs. 21%, p = 0.14) (Table 1).
Table 1.
Characteristics of patients with decompensated cirrhosis compared to another advanced chronic illnesses (N = 8707)
| Variable | Decompensated cirrhosis | Other advanced chronic illness | p-value |
|---|---|---|---|
| N | 539 | 8168 | |
| Age in years, mean (SD) | 62.5 (12.8) | 73.9 (14.2) | < 0.001 |
| Gender, N (%) | |||
| Female | 224 (41.6%) | 4117 (50.4%) | < 0.001 |
| Male | 315 (58.4%) | 4047 (49.6%) | |
| Non-binary | 0 (0%) | 4 (0.05%) | |
| Race/Ethnicity N (%) | |||
| American Indian or Native American | 2 (0.4%) | 13 (0.2%) | 0.03 |
| Asian | 48 (8.9%) | 1036 (12.7%) | |
| Black or African American (Non-Hispanic) | 18 (3.3%) | 703 (8.6%) | |
| Hispanic | 204 (37.8%) | 1237 (15.1%) | |
| Multiple Races | 4 (0.7%) | 85 (1.0%) | |
| Native Hawaiian or Pacific Islander | 1 (0.2%) | 31 (0.4%) | |
| Other Race* | 29(5.4%) | 410 (5.0%) | |
| Patient Refused/Unknown/Missing | 9 (1.7%) | 160 (2.0%) | |
| White or Caucasian (Non-Hispanic) | 224 (41.6%) | 4493 (55.0%) | |
| Language spoken, N (%) | |||
| English | 403 (74.8%) | 6957 (85.2%) | < 0.001 |
| Spanish | 106 (19.7%) | 642 (7.9%) | |
| Other* | 30 (5.6%) | 569 (7.0%) | |
| Insurance, N (%)** | |||
| Commercial | 130 (24.1%) | 2274 (27.8%) | < 0.001 |
| Managed/HMO | 33 (6.1%) | 345 (4.2%) | |
| Medicaid | 187 (35.2%) | 1460 (17.9%) | |
| Medicare | 162 (30.5%) | 3250 (39.8%) | |
| Other | 19 (3.6%) | 839 (10.3%) | |
| Social vulnerability index, mean (SD)** | 0.46 (0.29) | 0.37 (0.27) | < 0.001 |
| 2-Year mortality, mean (SD) | 98 (18.2%) | 1701 (20.8%) | 0.14 |
| Advance directive or POLST in EHR, N (%) | 118 (21.9%) | 2779 (34.0%) | < 0.001 |
Bold indicates that p-value for statistical significance is <0.05
EHR electronic health record, HMO health maintenance organization, POLST Physician Orders for Life-Sustaining Treatment
Includes Vietnamese (N = 8), Korean (N = 6), Arabic (N = 5), Armenian (N = 2), Farsi (N = 2), Cambodian (N = 1), Cantonese (N = 1), Japanese (N = 1), Mongolian (N = 1), Tagalog (N = 1), and Missing (N = 1)
114/8,707 (1.3%) of observations were missing
726/8,707 (8.3%) of observations were missing
Advance Directive Completion Among Patients with Decompensated Cirrhosis
Of patients with decompensated cirrhosis, 118 of 539 (22%) had an advance directive in the electronic health record. Patients with decompensated cirrhosis were significantly less likely to have an advance directive compared to patients with other advanced conditions (21.9% vs. 34.0%, p < 0.001); no other advanced condition had an advance directive completion rate as low as that of patients with decompensated cirrhosis (Table 1). Among patients with decompensated cirrhosis, those completing an advance directive, compared to patients without one, were older (65 vs. 62 years, p < 0.001). Hispanic patients were much less likely to have an advance directive than patients of other races and ethnicities. Patient gender, language, and level of vulnerability were unrelated to having an advance directive completed among patients with decompensated cirrhosis (Table 2). In multivariable analysis, older age (odds ratio [OR]: 1.03 per year, 95% confidence interval [CI] 1.01–1.05) was associated with higher advance directive completion, while Hispanic race/ethnicity (OR: 0.42, 95% CI 0.21–0.84) was independently associated with lower advance directive completion. Insurance and SVI were not significantly related to advance directive completion (Table 3). When incorporating the interaction between race/ethnicity and language, there was wide variation in predicted probabilities of advance directive completion across groups. Compared to White patients speaking English, Hispanic patients primarily speaking Spanish at home (27% vs. 14%, p = 0.004) and Hispanic patients primarily speaking English at home (27% vs. 13%, p = 0.013) were less likely to complete advance directives. Advance directive completion between English- and Spanish-speaking Hispanic patients was not different (14% vs. 13%, p = 0.57) (Supplementary Table 2).
Table 2.
Patient characteristics associated with having an advance directive, among patients with decompensated cirrhosis (N = 539)
| Variable | Has advance directive* (N = 118) | No advance directive (N = 421) | p-value |
|---|---|---|---|
| Age in years, mean (SD) | 65.2 (12.8) | 61.7 (12.7) | < 0.001 |
| Gender, N (%) | |||
| Female | 53 (23.7%) | 171 (76.3%) | 0.40 |
| Male | 65 (20.6%) | 250 (79.4%) | |
| Race/Ethnicity N (%) | |||
| Hispanic | 30 (14.6%) | 176 (85.4%) | 0.03 |
| White | 61 (27.2%) | 163 (72.8%) | |
| Asian | 11 (22.9%) | 37 (77.1%) | |
| Black | 5 (27.8%) | 13 (72.2%) | |
| Other | 11 (25.6%) | 32 (74.4%) | |
| Language spoken, N (%) | |||
| English | 96 (23.8%) | 307 (76.2%) | 0.099 |
| Spanish | 15 (14.2%) | 91 (85.9%) | |
| Other | 7 (23.3%) | 23 (76.7%) | |
| Insurance, N (%)** | |||
| Commercial | 27 (20.8%) | 103 (79.2%) | 0.052 |
| Managed/HMO | 3 (9.1%) | 30 (90.9%) | |
| Medicaid | 35 (18.8%) | 151 (81.2%) | |
| Medicare | 40 (24.7%) | 122 (75.3%) | |
| Other | 13 (46.4%) | 15 (53.6%) | |
| SVI, mean (SD)*** | 0.46 (0.28) | 0.43 (0.29) | 0.31 |
Bold indicates that p-value for statistical significance is <0.05
ACP advance care planning, HMO health maintenance organization, POLST Physician Orders for Life-Sustaining Treatment, SVI social vulnerability index
Included patients with an advance directive or a POLST in the electronic health record
8/539 (1.5%) of observations were missing
44/539 (8.2%) of observations were missing
Table 3.
Factors associated with having an advance directive or POLST completed among adults with decompensated cirrhosis (N = 531)
| Variable | Odds Ratio (95% Confidence Interval) |
|---|---|
| Age in years | 1.03 (1.00–1.05) |
| Male Gender (ref. Female) | 0.86 (0.55–1.34) |
| Race/Ethnicity (ref. White) | |
| Hispanic | 0.42 (0.21–0.84) |
| Asian | 0.86 (0.36–2.06) |
| Black | 0.89 (0.28–2.83) |
| Other race/ethnicity | 0.88 (0.39–1.98) |
| Language spoken (ref. English) | |
| Spanish | 0.78 (0.33–1.84) |
| Other | 0.62 (0.20–1.93) |
| Insurance (ref. Commercial) | |
| Managed/HMO | 0.56 (0.15–2.08) |
| Medicaid | 1.43 (0.76–2.67) |
| Medicare | 1.36 (0.72–2.60) |
| Other | 2.30 (0.80–6.60) |
| SVI (ref. Category 1) | |
| 2 | 0.66 (0.35–1.22) |
| 3 | 0.91 (0.46–1.83) |
| 4 | 1.38 (0.69–2.76) |
| Missing | 0.98 (0.42–2.29) |
Bold indicates that p-value for statistical significance is <0.05
This logistic regression model predicts having an advance directive or POLST in the electronic medical record. Model also adjusts for site, which is not statistically significant
HMO health maintenance organization, POLST Physician Orders for Life-Sustaining Treatment, SVI social vulnerability index
8 cases were missing insurance status
Discussion
In this multi-site population-based study, less than a quarter of patients with decompensated cirrhosis had an advance directive in the electronic health record, which was lower than all other studied serious conditions. In multivariable analysis, younger individuals with decompensated cirrhosis and those self-identifying as Hispanic, regardless of language spoken at home, had the lowest rates of completion; gender, insurance status, and socioeconomic disadvantage were not significantly associated. Our findings provide important considerations for planning interventions to improve and reduce disparities in ACP among adults with decompensated cirrhosis.
Published rates of advance directive completion among ambulatory adults with decompensated cirrhosis have ranged from 0 to 33% [11–15], but these estimates used data captured from single sites. In contrast, data for our study were obtained from multiple medical centers that use standardized approaches to document and extract such documentation, making our estimate potentially more generalizable. Our data are also the first to highlight significant differences in advance directive completion rates between patients with decompensated cirrhosis and other advanced chronic illnesses. As ACP is associated with improved end-of-life outcomes [4, 5], these findings may help explain why bereaved caregivers of decedents with liver disease report lower end-of-life quality of care compared to other advanced chronic illnesses [16]. Thus, health systems should prioritize quality improvement efforts to enhance ACP in this population. Future work should also evaluate whether other measures of ACP, such as designation of surrogate decision-makers, documentation of serious illness conversations, goal-concordant care, and end-of-life satisfaction as reported by caregivers, differ for patients with decompensated cirrhosis compared to those with other serious conditions.
Patients with decompensated cirrhosis, compared to those with other serious conditions, were more likely to be of Hispanic ethnicity. Recent work has demonstrated that the epidemiology of cirrhosis is shifting toward this demographic group nationally [17, 18]. Concerning ACP, Hispanic adults, compared to White adults, are also more likely to report multiple barriers [19–21], aligning with our finding that this racial/ethnic group was at the highest risk for not completing advance directives. Religious and cultural factors may contribute to these findings. For some Hispanics, religious beliefs may make planning for the future seem unnecessary, as outcomes are beyond their control [22, 23]. Additionally, older Hispanic adults tend to prefer less autonomy in their medical decisions, contributing to a lower priority for ACP [24]. While language did not appear to be related to advance directive completion in the multivariable model, an interaction between race/ethnicity and speaking a language other than English is a known barrier to ACP [19, 25, 26]. We found that Hispanic patients, whether they speak English or Spanish at home, were less likely to complete an advance directive compared to White patients. While greater socioeconomic vulnerability [27] and receiving insurance from plans intended for lower-income adults (Managed Care plans and Medicaid) [28] have both been associated with lower rates of advance directive completion, we did not observe this finding among our cohort of adults with decompensated cirrhosis. As shown from our data, this likely reflects the fact that this population already faces many financial and social challenges, so while addressing them is critical for future interventions, they might not be as helpful in discriminating which patients with decompensated cirrhosis need an ACP intervention the most.
Decompensated cirrhosis itself is already a condition associated with significant prognostic uncertainty [29], lower access to specialty care [30], insufficient prognostic communication [31, 32], and often cognitive decline in the setting of hepatic encephalopathy. Thus, the development of scalable and effective ACP interventions for this population is already fraught with multiple challenges. To guard against widening pre-existing disparities for Hispanic individuals, multi-level strategies may be needed, including those that target not only patients in a culturally sensitive manner but also health systems and communities [33]. For instance, although ACP for adults with decompensated cirrhosis is well supported by multiple professional societies [34–38], clinicians may need additional tools to support implementation, such as electronic health record templates to document conversations [15], workflow changes to support patient education and advance directive completion [39], specialty palliative care consultation [40], and additional training in ACP communication skills [41], all of which have preliminary evidence in hepatology but more supporting literature for other serious illness populations [42–46]. Health system policies also affect ACP completion rates. In the VA, implementation of the Life-Sustaining Treatment Decisions Initiative, a national policy for supporting ACP, along with targeted education of gastroenterologists, was associated with significant increases in ACP documentation for adults with cirrhosis [47]. Lastly, community interventions led by nurses, social workers, and lay health navigators have all been associated with improvements in ACP [48], particularly in racial and ethnic minority communities [49], suggesting that interdisciplinary engagement in intervention development is a worthwhile endeavor.
Our findings should be interpreted in the context of a few limitations. First, given the nature of the administrative data, we were unable to adjust for other clinical variables that may influence advance directive completion, such as transplant status, MELD score, and the presence of decompensations, although prior work has suggested that illness severity is associated with greater advance directive completion [12, 39]. Second, the clinical sites were academic medical centers, which may not accurately reflect other practice settings, and advance directives or POLST forms completed for patients outside of these health systems, or not uploaded into the electronic health record, were not captured. Third, our dataset lacked information regarding clinician factors that may be associated with advance directive completion. Finally, we only had data available for advance directive completion and not a full suite of ACP activities, such as discussions and surrogate designation. Notwithstanding, our data represent one of the few multi-center cohorts of primary care patients with advanced chronic illness centered on ACP, allowing for a population-based estimate of advance directive completion among patients with decompensated cirrhosis, which can inform policy, educational, and research efforts.
In summary, we found that advance directive completion is low for patients with decompensated cirrhosis, particularly among younger and Hispanic adults. Insights from our study also provide significant opportunities for developing culturally tailored ACP interventions that promote care that is not only high value but also equitable.
Supplementary Material
Supplementary Information The online version contains supplementary material available at https://doi.org/10.1007/s10620-025-09616-5.
Funding
The funding was supported by Patient-Centered Outcomes Research Institute (PLC-1609-36291).
Footnotes
Conflict of interest The authors declare no competing interests.
Disclaimer Views presented are those of the authors and do not necessarily represent the views of the federal government or its components.
Data Availability
No datasets were generated or analyzed during the current study.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
No datasets were generated or analyzed during the current study.