One Size Fits All-An Underappreciated Health Inequity.

This Viewpoint discusses why health priorities­tailored care, rather than the one-size-fits-all approach, is beneficial for marginalized individuals.

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.

Health Professionals Palliative Care Education for Older Adults: Overcoming Ageism, Racism, and Gender Bias.

Purpose of review: Most aging Americans lack access to specialist palliative care aimed at those experiencing serious illness and/or high symptom burden at end of life. The curricula used by training programs for all healthcare professions should focus on helping learners develop the primary palliative care skills and competencies necessary to provide compassionate bias-free care for adults with serious illness. We believe there is much opportunity to improve this landscape via the incorporation of palliative care competencies throughout generalist healthcare professional programs. Recent findings: Several recent publications highlight multiple issues with recruitment and retention of diverse students and faculty into healthcare professional training programs. There are also concerns that the curricula are reinforcing age, race, and gender biases. Due to these biases, healthcare professionals graduate from their training programs with socialized stereotypes unquestioned when caring for older adult minority patients and caregivers. Summary: Important lessons must be incorporated to assure that bias against age, race, and gender are discovered and openly addressed in healthcare professional's education programs. This review highlights these three types of bias and their interrelationships with the aim of revealing hidden truths in the education of healthcare professionals. Ultimately, we offer targeted recommendations of focus for programs to address implicit bias within their curricula.

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.

Disparities in Hospice Utilization for Older Cancer Patients Living in the Deep South.

CONTEXT: Hospice utilization is an end-of-life quality indicator. The Deep South has known disparities in palliative care that may affect hospice utilization. OBJECTIVES: The objective of this study was to evaluate the association among Deep South patient and hospital characteristics and hospice utilization. METHODS: This retrospective cohort study evaluated patient and hospital characteristics associated with hospice among Medicare cancer decedents aged ≥65 years in 12 southeastern cancer centers between 2012 and 2015. We examined patient-level characteristics (age, race, gender, cancer type, and received patient navigation) and hospital-level characteristics (board-certified palliative physician, inpatient palliative care beds, and hospice ownership). Outcomes included hospice (within 90 vs. three days of death). Relative risks (RRs) and 95% CIs evaluated the association between patient- and hospital-level characteristics and hospice outcomes using generalized log-linear models with Poisson distribution and robust variance estimates. RESULTS: Of 12,725 cancer decedents, 4142 (33%) did not utilize hospice. "No hospice" was associated with nonwhite (RR 1.24, 95% CI 1.17-1.32) and nonnavigated patients (RR 1.17, 95% CI 1.10-1.25), and those at a hospital with inpatient palliative care beds (RR 1.15, 95% CI 1.10-1.21). "Late hospice" (20%; n = 1458) was associated with being male (RR 1.31, 95% CI 1.19-1.44) and seen at a hospital without inpatient palliative care beds (RR 0.82, 95% CI 0.75-0.90). CONCLUSIONS: Hospice utilization differed by patient and hospital characteristics. Patients who were nonwhite, and nonnavigated, and hospitals with inpatient palliative care beds, were associated with no hospice. Research should focus on ways to improve hospice utilization in Deep South older cancer patients.

Educate, Nurture, Advise, Before Life Ends Comprehensive Heartcare for Patients and Caregivers (ENABLE CHF-PC): study protocol for a randomized controlled trial.

BACKGROUND: Palliative care is specialized medical care for people with serious illness that is focused on providing relief from symptoms and stress and improving the quality of life (QOL) for patients and their families. To help the 6.5 million U.S. adults and families affected by heart failure manage the high symptom burden, complex decision-making, and risk of exacerbation and death, the early integration of palliative care is critical and has been recommended by numerous professional organizations. However, few trials have tested early outpatient community-based models of palliative care for patients diagnosed with advanced heart failure and their caregivers. To address this gap, through a series of formative evaluation trials, we translated an oncology early palliative care telehealth intervention for heart failure to create ENABLE CHF-PC (Educate, Nurture, Advise, Before Life Ends, Comprehensive Heartcare for Patients and Caregivers). METHODS/DESIGN: The primary objective of this multisite pragmatic randomized controlled trial is to test the efficacy of ENABLE CHF-PC plus usual heart failure care compared to usual care alone. Community-dwelling persons who are ≥50 years of age with New York Heart Association class III/IV or American Heart Association/American College of Cardiology stage C/D heart failure and their primary caregiver (if present) are being randomized to one of two study arms. The ENABLE CHF-PC intervention group receives usual heart failure care plus an in-person palliative care assessment by a board-certified palliative care provider (caregivers are invited to attend), a series of nurse coach-led, weekly psychoeducational 20 to 60 min phone sessions using a guidebook called Charting Your Course (patients: 6 sessions and caregivers: 4 sessions), and monthly check-in calls. Charting Your Course topical content includes problem-solving, coping, self-care and symptom management, communication, decision-making, advance care planning, and life review (patients only). Primary outcomes include patient QOL and mood (depressive symptoms/anxiety) and caregiver QOL, mood, and burden at 8 and 16 weeks after baseline. Outcomes will be examined using an intention-to-treat approach and mixed effects modeling for repeated measures. DISCUSSION: This trial will determine whether the ENABLE CHF-PC model of concurrent heart failure palliative care is superior to usual heart failure care alone in achieving higher patient and caregiver QOL, improving mood, and lowering burden. TRIAL REGISTRATION: ClinicalTrials.gov, NCT02505425 . Registered on 22 July 2015.

Assessment of vascular function in low socioeconomic status preschool children: a pilot study.

Elevated brachial blood pressure (BP) in childhood tracks into adulthood. Central BP and measures of arterial stiffness, such as aortic augmentation index (AIx) and pulse wave velocity (PWV), have been associated with future cardiovascular disease. This pilot study assessed the feasibility of noninvasively measuring these parameters in preschool children and explored factors that may be associated with elevated BP in this age group. Brachial BP was measured using an electronic oscillometric unit (Dinamap PRO 100) and defined as elevated when systolic BP (SBP) and/or diastolic BP (DBP) was ≥ the 90th percentile for age, gender, and height. Central BP, AIx, and PWV were measured using applanation tonometry (SphygmoCor). C-reactive protein (CRP) was measured in serum samples. Sixteen African-American preschool children were recruited (4.4 ± 0.8 years, 69% males), 6 (38%) of whom had an elevated brachial BP (110 ± 10/69 ± 4 vs. 96 ± 8/55 ± 6 mm Hg, Cohen's d = 2.2). Children with elevated brachial BP had higher central SBP (d = 1.6) and DBP (d = 1.96) (97 ± 6/68 ± 4 vs. 85 ± 8/57 ± 6 mm Hg), AIx (d = 0.88) (31 ± 8 vs. 18 ± 16%, standardized to heart rate), and CRP (3.1 [2.3-6.3] vs. 0.1 [0.1-0.3] mg/dL, d = 2). There was no significant difference in PWV between groups (d = 0.26). CRP and SBP (Spearman r = 0.70), DBP (r = 0.68), central SBP (r = 0.58), and central DBP (r = 0.71) were positively correlated. Wide confidence intervals for the estimated effect sizes indicated a large degree of uncertainty about all estimates due to the small sample size. Noninvasive assessment of central BP and arterial stiffness is feasible in preschool children. Vascular inflammation may be an important factor that influences BP at an early age. Further studies in preschool children are needed to elucidate mechanisms of early onset hypertension.

The effects of caregiver emotional stress on the depressive symptomatology of the care recipient.

OBJECTIVES: Depression is a leading mental health issue affecting elderly individuals worldwide. Previous research widely neglects caregiver emotional stress as a probable contributing factor of depression in the elderly. This study investigated caregiver emotional stress as a chronic life stressor of an elderly care recipient using the life stress paradigm as the theoretical foundation. METHODS: The relationships between caregiver emotional stress and care receiver depressive symptoms, as well as other social and psychological mediation factors, were investigated using the 2004 wave of the National Long-Term Care Study (NLTCS). The NLTCS is a nationally representative longitudinal study used to identify frail and disabled elderly Medicare recipients living in the United States. The analytic sample of this study included 1340 caregiver-care receiver dyads who were asked a series of questions concerning their mental health (i.e. emotional stress and depressive symptoms), as well as the availability of social and psychological resources. RESULTS: Overall, the results showed that high levels of emotional stress reported by the caregiver were associated with a higher likelihood of the disabled care receiver reporting depressive symptoms. CONCLUSION: The findings of this investigation point to the importance of studying caregivers and care receivers as dyads as the stress associated with the caregiving role affects each member.