Culturally Sensitive Advance Care Planning for African American Advanced Cancer Patients: A Pilot Randomized Controlled Trial.

CONTEXT: Racial disparities in advance care planning (ACP) have been consistently identified in the literature. Few interventions have been designed to address the disparities identified. OBJECTIVES: To assess the feasibility, acceptability, and preliminary efficacy of a culturally sensitive, pilot ACP intervention for African American patients diagnosed with cancer in a safety net healthcare system. METHODS: Eligible patients with stage II, III, or IV breast, lung, colorectal, or prostate cancer were identified from the electronic health record, recruited, and randomized to the intervention group or usual care control group. Intervention participants met with an African American lay health advisor who assisted them in watching a video that addressed completion of ACP and facilitated ACP discussion. Descriptive analyses were conducted to examine baseline sociodemographic and clinical characteristics, cancer health literacy, and religious coping among participants. Logistic regression analyses were conducted to evaluate predictors of positive change in stage of intent to discuss ACP at 1, 3, and 6-months post intervention. RESULTS: Seventy-six participants were recruited and randomized (38 intervention, 38 controls). The mean age for participants was 58.8 years (SD 10.8), 62.5% were female, and 90.2% had stage III or IV disease. The intervention proved feasible with 89.5% completion. Intervention participants were more likely to have a positive change in stage of intent to discuss a living will or advance directive than usual care controls at one-month (AOR: 4.57, 95%CI: 1.11, 18.82) and 3-months (AOR: 5.38, 95%CI: 1.05, 27.68) post-intervention. The majority (94.1%) of intervention participants would recommend the intervention to a friend or family member. CONCLUSION: This culturally sensitive ACP program proved to be feasible, acceptable to participants, and showed some promise in promoting discussion about ACP among participants and members of their healthcare team.

A Review of Race and Ethnicity in Hospice and Palliative Medicine Research: Representation Matters.

CONTEXT: Despite documented racial and ethnic disparities in care, there is significant variability in representation, reporting, and analysis of race and ethnic groups in the hospice and palliative medicine (HPM) literature. OBJECTIVES: To evaluate the race and ethnic diversity of study participants and the reporting of race and ethnicity data in HPM research. METHODS: Adult patient and/or caregiver-centered research conducted in the U.S. and published as JPSM Original Articles from January 1, 2015, through December 31, 2019, were identified. Descriptive analyses were used to summarize the frequency of variables related to reporting of race and ethnicity. RESULTS: Of 1253 studies screened, 218 were eligible and reviewed. There were 78 unique race and ethnic group labels. Over 85% of studies included ≥ one non-standard label based on Office of Management and Budget designations. One-quarter of studies lacked an explanation of how race and ethnicity data were collected, and 83% lacked a rationale. Over half did not include race and/or ethnicity in the analysis, and only 14 studies focused on race and/or ethnic health or health disparities. White, Black, Hispanic, Asian, American Indian or Alaska Native, and Native Hawaiian or Other Pacific Islander persons were included in 95%, 71%, 43% 37%,10%, and 4% of studies. In 92% of studies the proportion of White individuals exceeded 57.8%, which is their proportion in the U.S. CONCLUSION: Our findings suggest there are important opportunities to standardize reporting of race and ethnicity, strive for diversity, equity, and inclusion among research participants, and prioritize the study of racial and ethnic disparities in HPM research.

Exploring the intersection of structural racism and ageism in healthcare.

The American Geriatrics Society (AGS) has consistently advocated for a healthcare system that meets the needs of older adults, including addressing impacts of ageism in healthcare. The intersection of structural racism and ageism compounds the disadvantage experienced by historically marginalized communities. Structural racism and ageism have long been ingrained in all aspects of US society, including healthcare. This intersection exacerbates disparities in social determinants of health, including poor access to healthcare and poor outcomes. These deeply rooted societal injustices have been brought to the forefront of the collective public consciousness at different points throughout history. The COVID-19 pandemic laid bare and exacerbated existing inequities inflicted on historically marginalized communities. Ageist rhetoric and policies during the COVID-19 pandemic further marginalized older adults. Although the detrimental impact of structural racism on health has been well-documented in the literature, generative research on the intersection of structural racism and ageism is limited. The AGS is working to identify and dismantle the healthcare structures that create and perpetuate these combined injustices and, in so doing, create a more just US healthcare system. This paper is intended to provide an overview of important frameworks and guide future efforts to both identify and eliminate bias within healthcare delivery systems and health professions training with a particular focus on the intersection of structural racism and ageism.

The Ethnogeriatric Implications of the COVID-19 Pandemic.

Disproportionate impact of COVID-19 is another in a long line of racial, ethnic, and socioeconomic disparities throughout the many realms of health care. The reasons for the disparities are manifold, with social determinants of health contributing heavily. Older adults have been identified as being at high risk of significant complications from COVID-19, and age coupled with other factors seems to put older adults belonging to underserved minorities at greatly heightened risk of those complications. The COVID-19 pandemic has magnified yet again racial and ethnic differences in health care that still must be addressed. This will require a multi-pronged approach to move beyond identifying racial, ethnic, and socioeconomic disparities in health care to full-force design and implementation of interventions that address this important issue. The next generation of clinicians, researchers, leaders, and policymakers can help advance the cause of eliminating fundamentally unjust health disparities, and our nation's older adults should not be left behind.

Early Palliative Care Is Associated With Reduced Emergency Department Utilization in Pancreatic Cancer.

OBJECTIVES: Most patients with pancreatic cancer have high symptom burden and poor outcomes. Palliative care (PC) can improve the quality of care through expert symptom management, although the optimal timing of PC referral is still poorly understood. We aimed to assess the association of early PC on health care utilization and charges of care for pancreatic cancer patients. MATERIALS AND METHODS: We selected patients with pancreatic cancer diagnosed between 2000 and 2009 who received at least 1 PC encounter using the Surveillance, Epidemiology, and End Results (SEER)-Medicare. Patients who had unknown follow-up were excluded. We defined "early PC" if the patients received PC within 30 days of diagnosis. RESULTS: A total of 3166 patients had a PC encounter; 28% had an early PC. Patients receiving early PC were more likely to be female and have older age compared with patients receiving late PC (P<0.001). Patients receiving early PC had fewer emergency department (ED) visits (2.6 vs. 3.0 visits, P=0.004) and lower total charges of ED care ($3158 vs. $3981, P<0.001) compared with patients receiving late PC. Patients receiving early PC also had lower intensive care unit admissions (0.82 vs. 0.98 visits, P=0.006) and total charges of intensive care unit care ($14,466 vs. $18,687, P=0.01). On multivariable analysis, patients receiving early PC were significantly associated with fewer ED visits (P=0.007) and lower charges of ED care (P=0.018) for all patients. CONCLUSIONS: Early PC referrals were associated with lower ED visits and ED-related charges. Our findings support oncology society guideline recommendations for early PC in patients with advanced malignancies such as pancreatic cancer.

Results From a Survey of American Geriatrics Society Members' Views on Physician-Assisted Suicide.

BACKGROUND: Physician-assisted suicide (PAS) is a controversial practice, currently legal in nine states and the District of Columbia. No prior study explores the views of the American Geriatrics Society (AGS) membership on PAS. DESIGN: We surveyed 1488 randomly selected AGS members via email. PARTICIPANTS: A total of 369 AGS members completed the survey (24.8% response rate). ANALYSIS: We conducted bivariate correlation analyses of beliefs related to support for PAS. We also conducted qualitative analysis of open-ended responses. RESULTS: There was no consensus regarding the acceptability of PAS, with 47% supporting and 52% opposing this practice. PAS being legal in the respondent's state, belief that respect for autonomy alone is sufficient to justify PAS, and intent to prescribe or support requests for PAS if legal in state of practice all correlated with support for PAS. There was no consensus on whether the AGS should oppose, support, or adopt a neutral stance on PAS. Most respondents believed that PAS is more complex among patients with low health literacy, low English proficiency, disability, dependency, or frailty. Most respondents supported mandatory palliative care consultation and independent assessments from two physicians. Themes identified from qualitative analysis include role of the medical profession, uncertainty of the role of professional organizations, potential unintended consequences, autonomy, and ethical and moral considerations. CONCLUSION: There was no consensus among respondents regarding the acceptability of PAS. Respondents expressed concern about vulnerable older populations and the need for safeguards when responding to requests for PAS. Ethical, legal, and policy discussions regarding PAS should consider vulnerable populations. J Am Geriatr Soc 68:23-30, 2019.

Examining the Association between Healthcare Utilization and Clinical Characteristics among Cancer Patients in a Safety Net Health System.

OBJECTIVE: The goal of this study was to examine the association between available patient and clinical characteristics and healthcare utilization in a cohort of breast, lung, and colorectal cancer patients within a safety-net hospital system. METHODS: Data for 979 breast, lung, and colorectal cancer patients admitted to a large, urban hospital for the year 2010 were extracted from the electronic medical record (EMR). Univariate and multivariate logistic regression analyses were performed to examine the association between relevant independent variables that were able to be captured from the EMR in discrete fields, emergency room (ER) utilization, and hospitalizations among members of the cohort. Spearman correlation coefficients to test the correlations between nonsteroidal anti-inflammatory drug and opioid prescriptions and healthcare utilization were also calculated. RESULTS: Of the 979 patients, 22% were 65 years and older, 43% were non-Hispanic black, 42% had Medicare, and 56% had colorectal cancer. Patient and clinical characteristics that were associated with increased ER utilization, included Hispanic ethnicity (adjusted odds ratio; AOR: 2.21, 95% confidence interval; CI: 1.52-3.21), non-Hispanic black race (AOR: 2.01, 95% CI: 1.43-2.82), and referral to palliative care (AOR: 2.15, 95% CI: 1.36-3.41). Referral to palliative care (AOR: 3.84, 95% CI: 1.47-10.0), low albumin (AOR: 2.42, 95% CI: 1.20-4.89), and presence of metastases (AOR: 1.98, 95% CI: 1.29-3.06) were associated with greater odds of hospitalization. Number of opioids prescribed strongly correlated with number of hospitalizations (ρ correlation = 0.74). Only 10.6% of patients had been referred to outpatient palliative care during the study period. CONCLUSIONS: Some patient and clinical characteristics associated with increased ER visits and hospitalizations in this cohort include race/ethnicity, palliative care referral, markers of advanced disease, and number opioids prescribed. Increasing knowledge of palliative care and access to palliative care among the underserved should be a focus of future research.

Reducing Disparities in the Quality of Palliative Care for Older African Americans through Improved Advance Care Planning: Study Design and Protocol.

Advance care planning (ACP) improves end-of-life care for patients and their caregivers. However, only one-third of adults have participated in ACP and rates are substantially lower among African Americans than among whites. Importantly, ACP improves many domains of care where there are racial disparities in outcomes, including receipt of goal-concordant care, hospice use, and provider communication. Yet, few studies have examined the effectiveness of ACP interventions among African Americans. The objectives of reducing disparities in the quality of palliative care for older African Americans through improved advance care planning (EQUAL ACP) are as follows: to compare the effectiveness of two interventions in (1) increasing ACP among African Americans and whites and (2) reducing racial disparities in both ACP and end-of-life care; and to examine whether racial concordance of the interventionist and patient is associated with ACP. EQUAL ACP is a longitudinal, multisite, cluster randomized trial and a qualitative study describing the ACP experience of participants. The study will include 800 adults ≥65 years of age (half African American and half white) from 10 primary care clinics in the South. Eligible patients have a serious illness (advanced cancer, heart failure, lung disease, etc.), disability in activities of daily living, or recent hospitalization. Patients are followed for one year and participate in either a patient-guided, self-management ACP approach, including a Five Wishes form or structured ACP with Respecting Choices First Steps. The primary outcome is formal or informal ACP-completion of advance directives, documented discussions with clinicians, and other written or verbal communication with surrogate decision makers about care preferences. Secondary outcomes assessed through after-death interviews with surrogates of patients who die during the study include receipt of goal-concordant care, health services use in the last year of life, and satisfaction with care. EQUAL ACP is the first large study to assess which strategies are most effective at both increasing rates of ACP and promoting equitable palliative care outcomes for seriously ill African Americans.

Understanding Underuse of Advance Care Planning Among a Cohort of African American Patients With Advanced Cancer: Formative Research That Examines Gaps in Intent to Discuss Options for Care.

BACKGROUND: Advance care planning (ACP), palliative care (PC), and hospice are often underutilized by African Americans (AAs). This study assessed the impact of stage of intent to discuss ACP options as key potential barriers. METHODS: We examined intent to discuss completion of ACP, PC, and hospice among 22 AA patients with cancer admitted to a local safety net hospital. Participants were asked about intent to discuss an advanced directive or living will (AD/LW), medical power of attorney (MPOA), PC, and hospice with their doctors. Intent to discuss these ACP components was based on the transtheoretical model. Electronic health records were reviewed at various intervals to assess completion of ACP behaviors and survival. RESULTS: Participants had colorectal (33%), breast (44%), and lung (23%) cancer, and 82% had stage III/IV disease. Low percentages of patients were in the precontemplation stage for AD/LW completion (4.6%), MPOA completion (13.6%), and PC discussions (27.2%), but 77.2% were in the precontemplation stage for hospice discussions. At 1 year, only 5% completed an AD/LW, 36.4% appointed an MPOA, 42.9% were referred to PC, and 12.5% were referred to hospice. More than half (54.6%) were deceased by the study's conclusion. Most (81%) of these died within 6 months of their baseline study assessment. CONCLUSIONS: Despite being hospitalized with advanced cancer and having poor prognosis, intent to discuss ACP options, PC, and hospice in this population was variable, and completion of these activities was low. This formative research is needed to develop education and counseling interventions for this high-risk, vulnerable population.

Bereaved family members' evaluation of hospice care: what factors influence overall satisfaction with services?

As patients near the end of life, bereaved family members provide an important source of evaluation of the care they receive. A study was conducted to identify which processes of care were associated with greater satisfaction with hospice services from the perception of bereaved family members. A total of 116,974 surveys from 819 hospices in the United States were obtained via the 2005 Family Evaluation of Hospice Care, an online repository of surveys of bereaved family members' perceptions of the quality of hospice care maintained by the National Hospice and Palliative Care Organization. Overall satisfaction was dichotomized as "excellent" vs. "other" (very good, good, fair, and poor). Using multivariate logistic regression, the association between overall satisfaction and the individual item problem scores that compose the Family Evaluation of Hospice Care were examined. Bereaved family members were more likely to rate overall satisfaction with hospice services as "excellent" if they were regularly informed about their loved one's condition (adjusted odds ratio [AOR]=3.76, 95% confidence interval [CI]=3.61-3.91), they felt the hospice team provided the right amount of emotional support to them (AOR=2.21, 95% CI=2.07-2.38), they felt that the hospice team provided them with accurate information about the patient's medical treatment (AOR=2.16, 95% CI=2.06-2.27), and they could identify one nurse as being in charge of their loved one's care (AOR=2.02, CI=1.92-2.13). These four key processes of care appear to significantly influence an "excellent" rating of overall satisfaction with hospice care.

Predictors of Placement of Inpatient Palliative Care Consult Orders Among Patients With Breast, Lung, and Colon Cancer in a Safety Net Hospital System.

BACKGROUND: The provision of palliative and end-of-life care to patients who are underrepresented and underserved provides unique challenges and opportunities. OBJECTIVES: To examine predictors of placement of inpatient palliative care consult orders among patients with breast, lung, and colorectal cancer hospitalized in a safety net hospital in 2010. METHODS: Simple and multivariable logistic regression of data on selected patients with cancer was performed to identify predictors of placement of inpatient palliative care consult orders. RESULTS: Of 979 patients, 56% had colorectal cancer, 23% had lung cancer, and 21% had breast cancer. Of those patients, 16% received an order for inpatient palliative care consultation during the study period. Patients who had more than 20 prescriptions for opioids ordered (adjusted odds ratio [AOR]: 9.10, 95% confidence interval [CI]: 4.62-17.95), had an order for a radiation oncology consult (AOR: 2.60, 95% CI: 1.50-4.49), or had low albumin (AOR: 2.75, 95% CI: 4.71) were more likely to have an order for an inpatient palliative care consult placed. Race and ethnicity were not statistically significant predictors. CONCLUSION: In this cohort of patients in a safety net hospital, markers of pain, advanced disease, and poor prognosis were associated with placement of inpatient palliative care consult orders.

African American bereaved family members' perceptions of the quality of hospice care: lessened disparities, but opportunities to improve remain.

Previous research has documented striking disparities in bereaved family members' perceptions of the quality of end-of-life care between African American and white decedents. Using data from the 2005 repository of the Family Evaluation of Hospice Care survey, we examined whether this disparity in quality of end-of-life care persists once an African American is enrolled in hospice. Of the 121,817 decedents whose proxies were surveyed, 4,095 were non-Hispanic black (African American), and 97,525 were non-Hispanic white. There were no statistically significant differences with regard to decedents' gender. Length of stay on hospice was similar across racial groups. Although previous research has demonstrated striking disparities in the perceived quality of end-of-life care, we found that there were either no differences (quality ratings scores) or less of a disparity in perceptions of concerns with the quality of end-of-life care when compared to the results of a previously reported national mortality follow-back survey, suggesting that though disparities in perceptions of care at end of life persist, on hospice they improve to some degree.

The Desires of Their Hearts: The Multidisciplinary Perspectives of African Americans on End-of-Life Care in the African American Community.

BACKGROUND: Studies have identified racial differences in advance care planning and use of hospice for care at the end of life. Multiple reasons for underuse among African American patients and their families have been proposed and deserve further exploration. OBJECTIVE: The goal of this study was to examine perceptions of advance care planning, palliative care, and hospice among a diverse sample of African Americans with varying degrees of personal and professional experience with end-of-life care and use these responses to inform a culturally sensitive intervention to promote awareness of these options. METHODS: Semistructured interviews and focus groups were conducted with African Americans who had varying degrees of experience and exposure to end-of-life care both personally and professionally. We conducted in-depth qualitative analyses of these interviews and focus group transcripts and determined that thematic saturation had been achieved. RESULTS: Several themes emerged. Participants felt that advance care planning, palliative care, and hospice can be beneficial to African American patients and their families but identified specific barriers to completion of advance directives and hospice enrollment, including lack of knowledge, fear that these measures may hasten death or cause providers to deliver inadequate care, and perceived conflict with patients' faith and religious beliefs. Providers described approaches they use to address these barriers in their practices. CONCLUSION: Findings, which are consistent with and further elucidate those identified from previous research, will inform design of a culturally sensitive intervention to increase awareness and understanding of advance care planning, palliative care, and hospice among members of the African American community.

Validation of a Geriatric Trauma Prognosis Calculator: A P.A.L.Li.A.T.E. Consortium Study.

BACKGROUND/OBJECTIVES: The P.A.L.Li.A.T.E. (prognostic assessment of life and limitations after trauma in the elderly) consortium has previously created a prognosis calculator for mortality after geriatric injury based on age, injury severity, and transfusion requirement called the geriatric trauma outcome score (GTOS). Here, we sought to create and validate a prognosis calculator called the geriatric trauma outcome score ii (GTOS II) estimating probability of unfavorable discharge. DESIGN: Retrospective cohort. SETTING: Four geographically diverse Level 1 trauma centers. PARTICIPANTS: Trauma admissions aged 65 to 102 years surviving to discharge from 2000 to 2013. INTERVENTION: None. MEASUREMENTS: Age, injury severity score (ISS), transfusion at 24 hours post-admission, discharge dichotomized as favorable (home/rehabilitation) or unfavorable (skilled nursing/long term acute care/hospice). Training and testing samples were created using the holdout method. A multiple logistic mixed model (GTOS II) was created to estimate the odds of unfavorable disposition then re-specified using the GTOS II as the sole predictor in a logistic mixed model using the testing sample. RESULTS: The final dataset was 16,114 subjects (unfavorable discharge status = 15.4%). Training (n = 8,057) and testing (n = 8,057) samples had similar demographics. The formula based on the training sample was (GTOS II = Age + [0.71 × ISS] + 8.79 [if transfused by 24 hours]). Misclassification rate and AUC were 15.63% and 0.67 for the training sample, respectively, and 15.85% and 0.67 for the testing sample. CONCLUSION: GTOS II estimates the probability of unfavorable discharge in injured elders with moderate accuracy. With the GTOS mortality calculator, it can help in goal setting conversations after geriatric injury.

A comparison of prognosis calculators for geriatric trauma: A Prognostic Assessment of Life and Limitations After Trauma in the Elderly consortium study.

BACKGROUND: The nine-center Prognostic Assessment of Life and Limitations After Trauma in the Elderly consortium has validated the Geriatric Trauma Outcome Score (GTOS) as a prognosis calculator for injured elders. We compared GTOS' performance to that of the Trauma Injury Severity Score (TRISS) in a multicenter sample. METHODS: Three Prognostic Assessment of Life and Limitations After Trauma in the Elderly centers not submitting subjects to the GTOS validation study identified subjects aged 65 years to 102 years admitted from 2000 to 2013. GTOS was specified using the formula [GTOS = age + (Injury Severity Score [ISS] × 2.5) + 22 (if transfused packed red cells (PRC) at 24 hours)]. TRISS uses the Revised Trauma Score (RTS), dichotomizes age (<55 years = 0 and ≥55 years = 1), and was specified using the updated 1995 beta coefficients. TRISS Penetrating was specified as [TRISSP = -2.5355 + (0.9934 × RTS) + (-0.0651 × ISS) + (-1.1360 × Age)]. TRISS Blunt was specified as [TRISSB = -0.4499 + (0.8085 × RTS Total) + (-0.0835 × ISS) + (-1.7430 × Age)]. Each then became the sole predictor in a separate logistic regression model to estimate probability of mortality. Model performances were evaluated using misclassification rate, Brier score, and area under the curve. RESULTS: Demographics (mean + SD) of subjects with complete data (N = 10,894) were age, 78.3 years ± 8.1 years; ISS, 10.9 ± 8.4; RTS = 7.5 ± 1.1; mortality = 6.9%; blunt mechanism = 98.6%; 3.1 % of subjects received PRCs. The penetrating trauma subsample (n = 150) had a higher mortality rate of 20.0%. The misclassification rates for the models were GTOS, 0.065; TRISSB, 0.051; and TRISSP, 0.120. Brier scores were GTOS, 0.052; TRISSB, 0.041; and TRISSP, 0.084. The area under the curves were GTOS, 0.844; TRISSB, 0.889; and TRISSP, 0.897. CONCLUSION: GTOS and TRISS function similarly and accurately in predicting probability of death for injured elders. GTOS has the advantages of a single formula, fewer variables, and no reliance on data collected in the emergency room or by other observers. LEVEL OF EVIDENCE: Prognostic, level II.

Access to hospice for African Americans: are they informed about the option of hospice?

OBJECTIVE: To examine whether African Americans are informed about hospice services, and to examine demographic or disease factors that may influence receipt of information about hospice. DESIGN: Retrospective cohort study. SETTING: Twenty-two states that accounted for nearly 70% of deaths in the United States in 2000. MEASUREMENTS: A mortality follow-back survey was conducted. Based on sampled death certificates from 22 states, informants listed on the death certificates were contacted by telephone regarding the decedent's dying experience. Among those persons not receiving hospice services, the respondents were asked if hospice was presented as an option for care at the end of life. RESULTS: Of 1578 interviews, 111 decedents were non-Hispanic, African Americans (average age, 71.5 years; 56% female). Of those, 32 (30.3%) of the decedents received hospice services, while 77 (68.5%) did not. Slightly more than half of African Americans (60; 53.8%) were not informed about hospice services and 12 (8.9%) were informed but did not enroll. Cancer sufferers were more likely to be counseled about hospice (p = 0.001). CONCLUSION: Slightly more than half of African Americans were not informed about hospice services, and of those who were informed, cancer was the leading cause of death. Information about hospice should be provided to patients regardless of diagnosis, and dissemination of information should be done aggressively in the African American community in an effort to make hospice a viable option for end-of-life care.