@article {12414, title = {Comparing Variations in Advance Directives Timing among Older Adults with End-Stage Renal Disease versus Cancer.}, journal = {American Journal of Hospice and Palliative Medicine}, year = {Forthcoming}, abstract = {

Having an advance directive (AD) is associated with better care at end of life and better quality of death. However, AD completion rates among End-Stage Renal Disease patients are lower than among cancer patients. ESRD patients commonly experience cognitive impairment, reducing their ability to make their own care choices as their disease progresses. Thus, having an AD earlier in the disease trajectory is important. Little is known about differences in AD completion timing among ESRD and cancer patients. Therefore, the purpose of this study was to (1) investigate difference in AD completion and timing between ESRD and cancer patients; and, (2) identify factors associated with the early and late AD completion. A retrospective cohort study was conducted. Data was drawn from the Health and Retirement Study, a United States representative longitudinal survey of older adults, using exit interviews conducted from 2006 to 2016 among 1886 proxy reporters of deceased participants with ESRD or cancer. ESRD patients had lower rates of AD completion compared to those with cancer. Higher education and being older were negatively associated with late AD completion in the last 3~months of life. Additionally, decedents with a diagnosis of ESRD, older age, and with higher education had higher odds of completing ADs one year or more before death. While ESRD patient were less likely to have ADs, those that had ADS were more likely than cancer patients to develop ADs earlier in the disease trajectory. Further studies are needed to determine effective strategies to increase the AD completion rate among patients with ESRD.

}, keywords = {advance directive, Cancer, End of life care, renal disease}, issn = {1938-2715}, doi = {10.1177/10499091221097676}, author = {Wang, Yu-Hsuan and Enguidanos, Susan} } @article {12857, title = {The Relationship Between Multiple Chronic Conditions and Physician Visits in Advance Care Planning Activities.}, journal = {American Journal of Hospice and Palliative Medicine}, volume = {40}, year = {2023}, pages = {965-970}, keywords = {Advance care planning, Advance directives, physician visit}, issn = {1938-2715}, doi = {10.1177/10499091221136854}, author = {Wang, Yu-Hsuan and Enguidanos, Susan} } @article {12426, title = {Advance directives completion and hospital out-of-pocket expenditures.}, journal = {Journal of Hospital Medicine}, volume = {17}, year = {2022}, pages = {437-444}, abstract = {

INTRODUCTION: Health care costs remain high at the end of life. It is not known if there is a relationship between~advance directive (AD) completion and hospital out-of-pocket costs. This analysis investigated whether AD completion was associated with lower hospital out-of-pocket costs at end of life.

METHODS: We used Health and Retirement Study participants who died between 2000 and 2014 (N = 9228) to examine the association between AD completion status and hospital out-of-pocket spending in the last 2 years of life through the use of a two-part model controlling for socioeconomic status, death-related characteristics and health insurance coverage.

RESULTS: About 44\% of decedents had completed ADs. Having an AD was significantly associated with $673 lower hospital out-of-pocket costs, with a higher magnitude of savings among younger decedents. Decedents who completed ADs 3 months or less before death had higher out-of-pocket costs ($1854 on average) than those who completed ADs more than 3 months before death ($1176 on average).

CONCLUSIONS: AD completion was significantly associated with lower hospital out-of-pocket costs, with greater out-of-pocket savings among younger decedents. Early AD completers experienced lower costs than decedents who completed ADs closer to death.

}, keywords = {advance directive, health care cost, Out-of-pocket medical expenses}, issn = {1553-5606}, doi = {10.1002/jhm.12839}, author = {Zhu, Yujun and Enguidanos, Susan} } @article {11565, title = {Anticipated Need for Future Nursing Home Placement by Sexual Orientation: Early Findings from the Health and Retirement Study}, journal = {Sexuality Research and Social Policy}, volume = {19}, year = {2022}, pages = {656{\textendash}662}, abstract = {Background With a growing population of lesbian, gay, bisexual, and transgender (LGBT) older adults, it is critical to better understand the future long-term care needs of this population. This study compares anticipated need for future nursing home placement, as well as health characteristics of lesbian, gay, and bisexual (LGB) and heterosexual adults. Methods Using data from the 2016 wave of the Health and Retirement Study, descriptive and bivariate analyses were conducted to examine anticipated nursing home placement and health characteristics of LGB (n = 137) and heterosexual (n = 3469) adults. Results There was a marginally significant difference in anticipated need for nursing home placement. LGB (34\%, SD = 29.2) adults reported a higher percent chance of ever having to move to a nursing home compared to heterosexual adults (27\%, SD = 27.3; p = 0.055). LGB respondents were less likely to have a living child/children (37\% vs 82\%, p < .001), but no other demographic differences were found between the samples. Conclusion/Policy Implication Findings from this early research add to the literature on the future care needs of older sexual minorities. Given the differing family structures of LGB adults and other factors, long-term care facilities must ensure their workforce is prepared to support a growing, diverse older adult population.}, keywords = {Health Disparities, Long-term Care, nursing home, sexual minorities}, isbn = {1553-6610}, doi = {10.1007/s13178-021-00581-y}, author = {Singleton, Mekiayla and Zachary Gassoumis and Enguidanos, Susan} } @article {10374, title = {So Help Me, God: Religiosity and End-of-Life Choices in a Nationally Representative Sample.}, journal = {Journal of Palliative Medicine}, year = {2019}, month = {2019 Sep 25}, abstract = {

Studies show significant associations between the various dimensions of religiousness and end-of-life (EOL) decisions, such as individuals with high religiosity are more likely to choose aggressive care at EOL. However, these studies focused largely on smaller cancer populations. To our knowledge, there is no existing literature about the association between religiosity and EOL decisions within a national sample of older adults. The objective of this study was to investigate the association between religiosity and advance directive (AD) completion, and among those with an AD, documented EOL care preferences, using a nationally representative sample. This was an observational study. Descriptive statistics and logistic regression were conducted with 6051 decedents from the Health and Retirement Study using self-reported frequency of religious service attendance, importance of religion, and religious affiliation. The dependent variables were AD completion and care preference. The independent variables were self-reported frequency of religious service attendance, importance of religion, and religious affiliation. Protestants and Catholics had significantly lower odds of AD completion, compared with those with no religious preferences. Decedents who reported religion as very important had significantly lower odds of AD completion than decedents who said religion is not too important. Furthermore, decedents who attended religious services at least once a week, compared with those who do not attend, had significantly higher odds of completing an AD. Among those who completed an AD, neither religiosity nor religious affiliation was significantly associated with preference for prolonged care. Our study demonstrates the influence religiosity has on the development of ADs, prompting seriously ill patients{\textquoteright} religious needs to be recognized and supported. It further suggests that religious services may provide a good opportunity for promoting knowledge and completion of ADs.

}, keywords = {End-of-Life Choices, Religion}, issn = {1557-7740}, doi = {10.1089/jpm.2019.0209}, author = {Hoe, Deborah F and Enguidanos, Susan} } @article {8964, title = {Ethnic Differences in Advance Directive Completion and Care Preferences: What Has Changed in a Decade?}, journal = {Journal of the American Geriatrics Society}, volume = {65}, year = {2017}, pages = {1352-1357}, abstract = {Studies have documented ethnic differences in advance directive (AD) completion, with lower rates in minority groups. Of those with ADs, blacks are more likely than whites to prefer aggressive care, but little is known about how these differences in preferences have changed over time in ethnic groups. This nationally representative study aimed to investigate whether these differences in AD development persisted after adjusting for important confounding variables. Year of death was analyzed to see how AD completion changed over time within ethnic groups, and for those with an AD, the association between these factors and opting for aggressive care was investigated. Data from the 2000 to 2012 Health and Retirement Study (HRS) exit interviews from 7,177 decedents were used. Analyses included logistic regression to determine the relationship between ethnicity and AD completion and preferences for aggressive care and how it changed over time in ethnic groups. Forty-six percent of decedents had completed an AD (whites 51.7\%, Hispanics 18.0\%, blacks 15.0\%). Of blacks completing an AD, 23.8\% elected prolonged care, compared with 13.3\% of Hispanics and 3.3\% of whites. Logistic regression revealed that blacks 75\% lower odds of completing an AD and Hispanics had 70\% lower odds. Model covariates had a small influence on ethnic differences, although in examining the change in AD completion over time, the odds of having an AD increased with each subsequent death year for blacks and whites but not Hispanics. Additional research is needed to investigate the effect of cultural differences in AD completion rates of ethnic minority groups to ensure that preferences are honored in the clinical setting.}, keywords = {Older Adults, Racial/ethnic differences}, issn = {1532-5415}, doi = {10.1111/jgs.14800}, author = {Portanova, Jaclyn and Jennifer A Ailshire and Perez, Catherine and Rahman, Anna and Enguidanos, Susan} } @article {8703, title = {Timing of Advance Directive Completion and Relationship to Care Preferences.}, journal = {J Pain Symptom Manage}, volume = {53}, year = {2017}, month = {2017 01}, pages = {49-56}, abstract = {

CONTEXT: Given recent Medicare rules reimbursing clinicians for engaging in advance care planning, there is heightened need to understand factors associated with the timing of advance directive (AD) completion before death and how the timing impacts care decisions.

OBJECTIVE: The purpose of this study was to investigate patterns in timing of AD completion and the relationship between timing and documented care preferences. We hypothesize that ADs completed late in the course of illness or very early in the disease trajectory will reflect higher preferences for aggressive care.

METHODS: We conducted a retrospective study using logistic regressions to analyze data from the Health and Retirement Study, a nationally representative longitudinal survey of older adults.

RESULTS: The analytic sample included exit interviews conducted from 2000 to 2012 among 2904 proxy reporters of deceased participants who had an AD. Nearly three-quarters (71\%) of ADs were completed a year or more before death. Being younger or a racial/ethnic minority, and having lower education, a diagnosis of cancer or lung disease, and an expected death were associated with completing an AD within the three months before death, while having the lowest quartile of assets and memory problems were inversely associated with AD completion. Minorities, those with lower education, expected death, and timing of AD completion were associated with electing aggressive care.

CONCLUSION: Early documentation of care wishes may not be associated with an increased likelihood of electing aggressive care; however, ADs completed in the last months of life have higher rates of election of aggressive care.

}, keywords = {Advance care planning, Advance directives, Aged, Aged, 80 and over, Female, Humans, Male, Middle Aged, Patient Participation, Patient Preference, Retrospective Studies}, issn = {1873-6513}, doi = {10.1016/j.jpainsymman.2016.08.008}, url = {https://linkinghub.elsevier.com/retrieve/pii/S0885-3924(16)30336-0}, author = {Enguidanos, Susan and Jennifer A Ailshire} }