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Item Attitudes Toward Advance Care Planning Among Persons with Dementia and their Caregivers(Cambridge University Press, 2020-05) Pettigrew, Corinne; Brichko, Rostislav; Black, Betty; O’Connor, Maureen K.; Guerriero Austrom, Mary; Robinson, Maisha T.; Lindauer, Allison; Shah, Raj C.; Peavy, Guerry M.; Meyer, Kayla; Schmitt, Frederick A.; Lingler, Jennifer H.; Domoto-Reilly, Kimiko; Farrar-Edwards, Dorothy; Albert, Marilyn; Psychiatry, School of MedicineObjectives: To examine factors that influence decision-making, preferences, and plans related to advance care planning (ACP) and end-of-life care among persons with dementia and their caregivers, and examine how these may differ by race. Design: Cross-sectional survey. Setting: 13 geographically dispersed Alzheimer's Disease Centers across the United States. Participants: 431 racially diverse caregivers of persons with dementia. Measurements: Survey on "Care Planning for Individuals with Dementia." Results: The respondents were knowledgeable about dementia and hospice care, indicated the person with dementia would want comfort care at the end stage of illness, and reported high levels of both legal ACP (e.g., living will; 87%) and informal ACP discussions (79%) for the person with dementia. However, notable racial differences were present. Relative to white persons with dementia, African American persons with dementia were reported to have a lower preference for comfort care (81% vs. 58%) and lower rates of completion of legal ACP (89% vs. 73%). Racial differences in ACP and care preferences were also reflected in geographic differences. Additionally, African American study partners had a lower level of knowledge about dementia and reported a greater influence of religious/spiritual beliefs on the desired types of medical treatments. Notably, all respondents indicated that more information about the stages of dementia and end-of-life health care options would be helpful. Conclusions: Educational programs may be useful in reducing racial differences in attitudes towards ACP. These programs could focus on the clinical course of dementia and issues related to end-of-life care, including the importance of ACP.Item Crucial Conversations for High-Risk Populations before Surgery: Advance Care Planning in a Preoperative Setting(Mary Ann Liebert, Inc., 2021-10-06) Patel, Roma; Torke, Alexia; Nation, Barb; Cottingham, Ann; Hur, Jennifer; Gruber, Rachel; Sinha, Shilpee; Medicine, School of MedicineBackground: High-risk patients undergoing elective surgery are at risk for perioperative complications, including readmissions and death. Advance care planning (ACP) may allow for preparation for such events. Objectives: (1) To assess the completion rate of advance directives (ADs) and their association with one year readmissions and mortality (2) to examine clinical events for decedents. Design: This is an observational cohort study conducted through chart review. Setting/Subjects: Subjects were 400 patients undergoing preoperative evaluation for elective surgery at two hospitals in the United States. Measurements: The prevalence of ADs at the time of surgery and at one year, readmissions, and mortality at one year were determined. Results: Three-hundred ninety patients were included. In total, 102 (26.4%) patients were readmitted, yet did not complete an AD. Seventeen (4.4%) patients filed an AD during follow-up. Nineteen patients died and mortality rate was 4.9%. There was a significant association between completing an AD before death. Of the decedents, seven (37%) underwent resuscitation, but only four had ADs. Conclusions: Many high-risk surgical patients would benefit from ADs before clinical decline. Preoperative clinics present a missed opportunity to ensure ACP occurs before complications arise.Item Do Life-sustaining Treatment Orders Match Patient and Surrogate Preferences? The Role of POLST(Springer, 2021) Hickman, Susan E.; Torke, Alexia M.; Sachs, Greg A.; Sudore, Rebecca L.; Tang, Qing; Bakoyannis, Giorgos; Heim Smith, Nicholette; Myers, Anne L.; Hammes, Bernard J.; School of NursingBackground: It is essential to high-quality medical care that life-sustaining treatment orders match the current, values-based preferences of patients or their surrogate decision-makers. It is unknown whether concordance between orders and current preferences is higher when a POLST form is used compared to standard documentation practices. Objective: To assess concordance between existing orders and current preferences for nursing facility residents with and without POLST forms. Design: Chart review and interviews. Setting: Forty Indiana nursing facilities (29 where POLST is used and 11 where POLST is not in use). Participants: One hundred sixty-one residents able to provide consent and 197 surrogate decision-makers of incapacitated residents with and without POLST forms. Main measurements: Concordance was measured by comparing life-sustaining treatment orders in the medical record (e.g., orders about resuscitation, intubation, and hospitalization) with current preferences. Concordance was analyzed using population-averaged binary logistic regression. Inverse probability weighting techniques were used to account for non-response. We hypothesized that concordance would be higher in residents with POLST (n = 275) in comparison to residents without POLST (n = 83). Key results: Concordance was higher for residents with POLST than without POLST (59.3% versus 34.9%). In a model adjusted for resident, surrogate, and facility characteristics, the odds were 3.05 times higher that residents with POLST had orders for life-sustaining treatment match current preferences in comparison to residents without POLST (OR 3.05 95% CI 1.67-5.58, p < 0.001). No other variables were significantly associated with concordance. Conclusions: Nursing facility residents with POLST are significantly more likely than residents without POLST to have concordance between orders in their medical records and current preferences for life-sustaining treatments, increasing the likelihood that their treatment preferences will be known and honored. However, findings indicate further systems change and clinical training are needed to improve POLST concordance.Item Does Acculturation Matter? End-of-Life Care Planning and Preference of Foreign-born Older Immigrants in the United States(Oxford Academic, 2019-05-01) Grace Yi, Eun-Hye; School Of Social WorkAbstract Background and Objectives Advance care planning (ACP) is a critical component of health care affecting the quality of later life. Responding to the increase in the older immigrant population in the United States, this empirical study explored the racial/ethnic gaps in ACP behaviors among older immigrants and examined the end-of-life (EOL) care planning and preferences of foreign-born immigrant older adults focusing on race/ethnicity, acculturation, health need factors, and enabling social factors (financial capability, public assistance, and informal supports) after controlling predisposing factors (sociodemographic characteristics). Research Design and Methods Using a subsample from the National Health and Aging Trends Study 2011 and 2012, hierarchical logistic regression models of the EOL plan and preferences were examined with 50 multiple imputation data sets (n = 232). Results Descriptive statistics reveal lower ACP engagement of immigrants from racial/ethnic minority groups. In logistic models, however, only Black immigrants were less likely than Whites to have EOL conversations. Among acculturation factors, age at immigration was only negatively associated with having a durable power of attorney for health, but not significantly associated with other ACP behaviors. Instead, health and social factors, primarily need in health and informal support (i.e., number of coresidents and receiving financial help from family members), were associated with different types of ACP components. Receiving public assistance (i.e., receiving Medicaid and SSI) were positively associated with EOL treatment preferences. Discussion and Implications Older foreign-born immigrants, in general, showed lower ACP engagement than the overall older population. Moreover, minority immigrants were lower on ACP engagement than both White immigrants. This study highlights the need for formal and informal assistance for enhancing EOL planning for older immigrants. Adding to the culturally competent approach, policy efforts should address social and health factors that accrued throughout individuals’ life spans and affect older immigrants’ EOL preparation and care.Item Factors associated with concordance between POLST orders and current treatment preferences(Wiley, 2021) Hickman, Susan E.; Torke, Alexia M.; Sachs, Greg A.; Sudore, Rebecca L.; Tang, Qing; Bakoyannis, Giorgos; Heim Smith, Nicholette; Myers, Anne L.; Hammes, Bernard J.; School of NursingBackground: POLST is widely used to document the treatment preferences of nursing facility residents as orders, but it is unknown how well previously completed POLST orders reflect current preferences (concordance) and what factors are associated with concordance. Objectives: To describe POLST preference concordance and identify factors associated with concordance. Design: Chart reviews to document existing POLST orders and interviews to elicit current treatment preferences. Setting: POLST-using nursing facilities (n = 29) in Indiana. Participants: Nursing facility residents (n = 123) and surrogates of residents without decisional capacity (n = 152). Measurements: Concordance was determined by comparing existing POLST orders for resuscitation, medical interventions, and artificial nutrition with current treatment preferences. Comfort-focused POLSTs contained orders for do not resuscitate, comfort measures, and no artificial nutrition. Results: Overall, 55.7% (123/221) of residents and 44.7% (152/340) of surrogates participated (total n = 275). POLST concordance was 44%, but concordance was higher for comfort-focused POLSTs (68%) than for non-comfort-focused POLSTs (27%) (p < 0.001). In the unadjusted analysis, increasing resident age (OR 1.04, 95% CI 1.01-1.07, p < 0.01), better cognitive functioning (OR 1.07, 95% CI 1.02-1.13, p < 0.01), surrogate as the decision-maker (OR 2.87, OR 1.73-4.75, p < 0.001), and comfort-focused POLSTs (OR 6.01, 95% CI 3.29-11.00, p < 0.01) were associated with concordance. In the adjusted multivariable model, only having an existing comfort-focused POLST was associated with higher odds of POLST concordance (OR 5.28, 95% CI 2.59-10.73, p < 0.01). Conclusions: Less than half of all POLST forms were concordant with current preferences, but POLST was over five times as likely to be concordant when orders reflected preferences for comfort-focused care. Findings suggest a clear need to improve the quality of POLST use in nursing facilities and focus its use among residents with stable, comfort-focused preferences.Item Impact of Community Health Workers on Elderly Patients' Advance Care Planning and Health Care Utilization: Moving the Dial(Lippincott, Williams & Wilkins, 2017-04) Litzelman, Debra K.; Inui, Thomas S.; Griffin, Wilma J.; Perkins, Anthony; Cottingham, Ann H.; Wendholt, Kathleen M.; Ivy, Steven S.; Medicine, School of MedicineBACKGROUND: Advance care planning (ACP) is recommended for all persons to ensure that the care they receive aligns with their values and preferences. OBJECTIVE: To evaluate an ACP intervention developed to better meet the needs and priorities of persons with chronic diseases, including mild cognitive impairment. RESEARCH DESIGN: A year-long, pre-post intervention using lay community health workers [care coordinator assistants (CCAs)] trained to conduct and document ACP conversations with patients during home health visits with pre-post evaluation. SUBJECTS: The 818 patients were 74.2 years old (mean); 78% women; 51% African American; 43% white. MEASURES: Documentation of ACP conversation in electronic health record fields and health care utilization outcomes. RESULTS: In this target population ACP documentation rose from 3.4% (pre-CCA training) to 47.9% (post) of patients who had at least 1 discussion about ACP in the electronic health record. In the 1-year preintervention period, there were no differences in admissions, emergency department (ED) visits, and outpatient visits between patients who did and did not have ACP discussion. After adjusting for prior hospitalization and ED use histories, ACP discussions were associated with a 34% less probability of hospitalization (hazard ratios, 0.66; 95% confidence interval, 0.45-0.97), and similar effects are apparent on ED use independent of age and prior ED use effects. CONCLUSIONS: Patients with chronic diseases including mild cognitive impairment can engage in ACP conversations with trusted home health care providers. Having ACP conversation is associated with significant reduction in seeking urgent health care and in hospitalizations.Item Reasons for Discordance and Concordance between POLST Orders and Current Treatment Preferences(Wiley, 2021) Hickman, Susan E.; Torke, Alexia M.; Heim Smith, Nicholette; Myers, Anne L.; Sudore, Rebecca L.; Hammes, Bernard J.; Sachs, Greg A.; School of NursingBackground: The reasons for discordance between advance care planning (ACP) documentation and current preferences are not well understood. The POLST form offers a unique opportunity to learn about the reasons for discordance and concordance that has relevance for POLST as well as ACP generally. Design: Qualitative descriptive including constant comparative analysis within and across cases. Setting: Twenty-six nursing facilities in Indiana. Participants: Residents (n = 36) and surrogate decision-makers of residents without decisional capacity (n = 37). Measurements: A semi-structured interview guide was used to explore the reasons for discordance or concordance between current preferences and existing POLST forms. Findings: Reasons for discordance include: (1) problematic nursing facility practices related to POLST completion; (2) missing key information about POLST treatment decisions; (3) deferring to others; and (4) changes over time. Some participants were unable to explain the discordance due to a lack of insight or inability to remember details of the original POLST conversation. Explanations for concordance include: (1) no change in the resident's medical condition and/or the resident is unlikely to improve; (2) use of the substituted judgment standard for surrogate decision-making; and (3) fixed opinion about what is "right" with little to no insight. Conclusion: Participant explanations for discordance between existing POLST orders and current preferences highlight the importance of adequate structures and processes to support high quality ACP in nursing facilities. Residents with stable or poor health may be more appropriate candidates for POLST than residents with a less clear prognosis, though preferences should be revisited periodically as well as when there is a change in condition to help ensure existing documentation is concordant with current treatment preferences.Item Reasons for Discordance Between Life-Sustaining Treatment Preferences and Medical Orders in Nursing Facilities Without POLST(Sage, 2023) Heim Smith, Nicholette L.; Sudore, Rebecca L.; Myers, Anne L.; Hammes, Bernard J.; Hickman, Susan E.; School of NursingBackground: Life-sustaining treatment (LST) orders are important communication tools used to ensure preference-concordant care at the end of life. Recent studies reveal concerning rates of discordance between current preferences and documented LST orders, especially in nursing facilities without POLST. Reasons for discordance in facilities using POLST have been explored, however the majority of nursing facilities in the United States do not yet use the POLST form. Design: Qualitative descriptive study using constant comparative analysis. Setting: Nursing facilities in Indiana (n = 6) not using POLST. Participants: Residents (n = 15) and surrogate decision-makers of residents without decisional capacity (n = 15) with discordance between current preferences and documented LST orders. Measurements: Do not resuscitate, do not hospitalize (DNH), and do not intubate (DNI) orders were extracted from medical charts. Current preferences were elicited using the Respecting Choices Advanced Steps model. A semi-structured interview guide was used to explore reasons for discordance between current preferences and LST orders. Results: Reasons for discordance included: (1) inadequate information about the range of available LST options, what each involves, and how to formally communicate preferences; (2) no previous discussion with facility staff; (3) no documentation of previously expressed preferences; and (4) family involvement. Conclusion: Reasons for discordance between expressed preferences and LST orders suggest that in facilities without a uniform and systematic LST order documentation strategy like POLST, these conversations may not occur and/or be documented. Staff should be aware that residents and surrogates may have preferences about LSTs that require strategic solicitation and documentation.Item The care planning umbrella: The evolution of advance care planning(Wiley, 2023) Hickman, Susan E.; Lum, Hillary D.; Walling, Anne M.; Savoy, April; Sudore, Rebecca L.; School of NursingItem Top Ten Tips Palliative Care Clinicians Should Know About Delivering Antiracist Care to Black Americans(Mary Ann Liebert, 2022) Jones, Katie Fitzgerald; Laury, Esther; Sanders, Justin J.; Starr, Lauren T.; Rosa, William E.; Booker, Staja Q.; Wachterman, Melissa; Jones, Christopher A.; Hickman, Susan; Merlin, Jessica S.; Meghani, Salimah H.; School of NursingRacial disparities, including decreased hospice utilization, lower quality symptom management, and poor-quality end-of-life care have been well documented in Black Americans. Improving health equity and access to high-quality serious illness care is a national palliative care (PC) priority. Accomplishing these goals requires clinician reflection, engagement, and large-scale change in clinical practice and health-related policies. In this article, we provide an overview of key concepts that underpin racism in health care, discuss common serious illness disparities in Black Americans, and propose steps to promote the delivery of antiracist PC.