Patient Navigator Intervention to Improve Palliative Care Outcomes for Hispanic Patients With Serious Noncancer Illness: A Randomized Clinical Trial.

Importance: Disparities persist across the trajectory of serious illness, including at the end of life. Patient navigation has been shown to reduce disparities and improve outcomes for underserved populations. Objective: To determine the effectiveness of a lay patient navigator intervention, Apoyo con Cariño, in improving palliative care outcomes among Hispanic patients. Design, Setting, and Participants: This was a multicenter randomized clinical trial that took place across academic, nonprofit, safety-net, and community health care systems in urban, rural, and mountain/frontier regions of Colorado from January 2017 to January 2021. Self-identifying Hispanic adults with serious noncancer medical illness and limited prognosis were recruited. Data were collected and analyzed from July 2022 to July 2023. Interventions: Participants randomized to the intervention group received 5 home visits from a bilingual, bicultural lay patient navigator; participants randomized to control received care as usual. Both groups received culturally tailored educational materials. Investigators/outcome accessors remained blinded to participant assignment. Main Outcomes and Measures: Change in score from baseline to 3 months on the Functional Assessment of Chronic Illness Therapy (FACIT) General quality of life (QOL) scale (primary outcome), Advance Care Planning (ACP) Engagement Survey, Brief Pain Inventory, Edmonton Symptom Assessment Scale, and FACIT Spiritual Well-Being subscale; at 6 months, advance directive (AD) documentation; and at 46 months or death, hospice utilization and length of stay, as well as aggressiveness of care at end of life. Results: Of 209 patients enrolled (mean [SD] age, 63.6 [14.3] years; 108 [51.7%] male), 105 patients were randomized to control and 104 patients to the intervention. There were no statistically significant differences in the change in mean (SD) QOL score between the intervention and control groups (5.0 [16.5] vs 4.3 [15.5]; P = .75). Participants in the intervention group, compared with the control group, had statistically significant greater increases in mean (SD) ACP engagement (0.8 [1.3] vs 0.1 [1.4]; P < .001) and were more likely to have a documented AD (62 of 104 [59.6%] vs 28 of 105 [26.9%]; P < .001). There were no statistically significant differences in mean (SD) change in pain intensity score (0-10) between patients in the intervention group compared with control (-0.4 [2.6] vs -0.5 [2.8]; P = .79), nor pain interference (-0.2 [3.7] vs -0.4 [3.7]; P = .71). Patients receiving the intervention were more likely to be referred to hospice compared with patients receiving control (19 of 43 patients [44.2%] vs 7 of 33 patients [21.2%]; P = .04) and less likely to receive aggressive care at end of life (27 of 42 patients [64.3%] vs 28 of 33 patients [84.8%]; P = .046). Conclusion and Relevance: In this randomized clinical trial, a culturally tailored patient navigator intervention did not improve QOL for patients. However, the intervention did increase ACP engagement, AD documentation, and hospice utilization in Hispanic persons with serious medical illness. Trial Registration: ClinicalTrials.gov Identifier: NCT03181750.

Post-Acute Care Outcomes of Cancer Patients <65 Reveal Disparities in Care Near the End of Life.

Background: Post-acute care outcomes for patients with cancer <65 with multiple payers are largely unknown. Objective: Describe the population and outcomes of younger adults discharged to skilled nursing facility (SNF) and those discharged home or with home health care six months following hospitalization. Design: Descriptive cohort analysis. Setting/Subjects: Using a linkage between the Colorado All Payers Claims Database and the Colorado Central Cancer Registry, we studied patients <65 with stage III or IV advanced cancer between 2012 and 2017. Measurements: Receipt of cancer treatment, 30-day readmission, death, and hospice use. Groups of interest were compared by patient demographics and disease characteristics using chi-square tests. Logistic regression was used to describe unadjusted and adjusted outcome rates among discharge setting. Kaplan-Meier method was used to estimate survival by discharge destination. Results: Three percent of patients were discharged to SNF, 79.0% to home, and 18.0% to home health care. SNF discharges were less likely to receive cancer treatment. Among decedents, 39.0%, 51.0%, and 58.0% of SNF, home, and home health care discharges received hospice, respectively. Patients with Medicaid were more likely to be discharged to an SNF. Black/Hispanic patients were more likely to have Medicaid and received less radiation and hospice care, irrespective of discharge location. Those who were discharged to SNF were more likely to receive radiation compared to White patients. Conclusions: Younger patients with cancer discharged to SNF were unlikely to receive cancer treatment and hospice care before death. Racial disparities exist in cancer treatment receipt and hospice use warranting further investigation.

Local Area Hospice Capacity and Rural Disparities in Hospice Use among Older Adults with Metastatic Breast Cancer.

Background: Little is known about how local area hospice capacity and staffing levels impact hospice use in urban versus rural areas. Objectives: To examine the association between local hospice capacity and staffing levels and hospice use in the context of rural disparities in hospice use, among a sample of patients with metastatic breast cancer. Design: A retrospective cohort study using Surveillance Epidemiology End-Results (SEER)-Medicare linked data 2000-2010, Medicare Provider of Service files, and Census 2000 U.S. Zip Code Tabulation Areas files. Setting: Use of Medicare-certified hospice programs among older adults with metastatic breast cancer residing in one of the SEER program cancer registries designated by National Cancer Institute in the United States. Measurements: Measurements of geographic access to hospices include urban/rural characteristics of patient residence and driving time from the nearest Medicare-certified hospice headquarter. Measurements of local-area hospice capacity and staffing levels include per capita number of Medicare-certified hospice programs and full-time employees among older adults within a predefined radius. Results: Among the study population (N = 5418), remote and suburban areas were negatively associated with hospice use. Lower hospice use in remote and suburban areas was associated with fewer per capita number of Medicare-certified hospice program employees in local areas ≥70-minute driving radius (p = 0.0042), while per capita number of Medicare-certified hospice programs in local areas showed no impact. Conclusion: For older patients with metastatic breast cancer, availability of hospice staff, rather than driving distance or the number of hospice agencies, may limit hospice use in remote and suburban areas.

Financial interventions for family caregivers of individuals with chronic illness: a scoping review protocol.

INTRODUCTION: There are 53 million caregivers in the USA providing informal care for individuals with chronic illnesses. These caregivers contribute significantly to the healthcare system, yet they may experience adverse consequences due to caregiving, including financial burden. The purpose of this scoping review is to fill a research gap on understanding the nature and effect of financial interventions for family caregivers. METHODS AND ANALYSIS: This study will use the Arksey and O'Malley scoping review framework to systematically search for articles in MEDLINE, PubMed, CINAHL Complete, Cochrane Library, PsycINFO, Dissertations & Theses Global, and Web of Science during April 2022. Articles published from 1997 to the present will be included for the review. Data from articles will be extracted and summarised for financial intervention nature, scope, measurement, effect and health system context. ETHICS AND DISSEMINATION: This study does not include human subjects; therefore, no ethical review will be undertaken. Findings will be disseminated in scholarly journals and at caregiving and ageing conferences, such as the Gerontological Society of America.

Ethical and Policy Implications of Financial Burden in Family Caregivers.

Palliative care nurses are key members of the health care team and provide support to patients and their families navigating chronic and life-limiting illness. Financial burden is an issue inherent to chronic illness, yet has not been fully addressed in family caregivers. The purpose of this article is to (1) provide a case study of a family caregiver navigating chronic illness with her daughter and the associated financial and employment consequences and (2) review the nursing ethical, policy, and practice implications of financial burden for family caregivers. The ethical implications of financial burden in family caregivers relate to health equity and health outcomes for both the patient and family caregiver in treatment access and quality. The policy implications include state and federal policies related to caregiver compensation and support and family medical leave. Palliative care nurses play an integral role in addressing caregiver financial burden through assessment, education, referral, and policy support. Family caregivers are essential to the palliative care team, and palliative care nurses have the opportunity to lead initiatives to support the financial well-being of family caregivers in practice, research, and policy settings.

Post-Acute Care Outcomes and Functional Status Changes of Adults with New Cancer Discharged to Skilled Nursing Facilities.

OBJECTIVE: Older hospitalized adults with an existing diagnosis of cancer rarely receive cancer treatment after discharge to a skilled nursing facility (SNF). It is unclear to what degree these outcomes may be driven by cumulative effects of previous cancer treatment and their complications vs an absolute functional threshold from which it is not possible to return. We sought to understand post-acute care outcomes of adults newly diagnosed with cancer and explore functional improvement during their SNF stay. DESIGN: Retrospective cohort study, 2011-2013. SETTING AND PARTICIPANTS: Surveillance, Epidemiology, and End Results - Medicare database of patients with new stage II-IV colorectal, pancreatic, bladder, or lung cancer discharged to SNF. METHODS: Primary outcome was time to death after hospital discharge. Covariates include cancer treatment receipt and hospice use. A Minimum Data Set (MDS)-Activities of Daily Living (ADL) score was calculated to measure changes in ADLs during SNF stay. Patient groups of interest were compared descriptively using means and standard deviations for continuous variables and frequencies and percentages for categorical variables. Logistic regression was used to compare patient groups. RESULTS: A total of 6791 cases were identified. Forty-six percent of patients did not receive treatment or hospice, 25.0% received no treatment but received hospice, 20.8% received treatment but no hospice, and 8.5% received both treatment and hospice. Only 43% of decedents received hospice. Patients who received treatment but not hospice had the best survival. There were limited improvements in MDS-ADL scores in the subset of patients for whom we have complete data. Those with greater functional improvement had improved survival. CONCLUSIONS AND IMPLICATIONS: The majority of patients did not receive future cancer treatment or hospice care prior to death. There was limited improvement in MDS-ADL scores raising concern this population might not benefit from the rehabilitative intent of SNFs.

The patient-driven payment model: A missed opportunity for patient-centered cancer care.

Hospitalized older patients with advanced cancer who were discharged to a skilled nursing facility (SNF) for rehabilitation are unlikely to receive future cancer treatment, have high 30-day readmission rates, and high mortality yet minimal hospice use. The Medicare SNF benefit was designed to be a bridge and provide short-term nursing and rehabilitation care for patients after a hospitalization. However, advanced cancer patients churn through the health system cycling between the hospital, post-acute care facilities, and home in the last months of life. This article explores the potential impact of the patient-driven payment model, a new SNF reimbursement model introduced by the Center for Medicare and Medicaid Services in 2019, on the experience of older cancer patients. Previously, SNF reimbursement was based on the hours of rehabilitative therapy provided to patients, unintentionally incentivizing SNFs to provide more therapy resulting in long lengths of stay and increased Medicare expenditure. The new patient-driven payment model bases reimbursement on patient clinical characteristics and resources utilized during their SNF stay. We discuss the impact this payment model might have on cancer patients in the SNF setting and highlight the importance of access to palliative care for this population. We discuss challenges policymakers face in creating palliative care guidelines and developing palliative care delivery models in SNFs. We highlight the policy gaps that remain in creating a system that achieves high-quality SNF care and conclude by offering suggestions that might better incorporate a patient's illness trajectory, prognosis, and goals of care.

The National Postdoctoral Palliative Care Research Training Collaborative: History, Activities, Challenges, and Future Goals.

Background: Palliative care-related postdoctoral training opportunities are critical to increase the quantity and quality of palliative care research. Objective: To describe the history, activities, challenges, and future goals of the National Postdoctoral Palliative Care Research Training Collaborative. Design: National web-based survey of participating program leaders. Measurements: Information about participating programs, trainees, challenges faced, and future goals. Results: Nine participating programs at academic institutions across the United States focus on diverse aspects of palliative care research. The majority of 73 current and former fellows are female (75%) and white (84%). In total, 38% of fellows (n = 28) have MD backgrounds, of whom less than half (n = 12) completed hospice and palliative medicine fellowships. An additional 38% of fellows (n = 28) have nursing PhD backgrounds and 23% (n = 17) have other diverse types of PhD backgrounds. Key challenges relate to recruiting diverse trainees, fostering a shared identity, effectively advocating for trainees, and securing funding. Future goals include expanding efforts to engage clinician and nonclinician scientists, fostering the pipeline of palliative care researchers through expanded mentorship of predoctoral and clinical trainees, increasing the number of postdoctoral palliative care training programs, and expanding funding support for career development grants. Conclusion: The National Postdoctoral Palliative Care Research Training Collaborative fills an important role in creating a community for palliative care research trainees and developing strategies to address shared challenges.

Outcomes of Patients With Cancer Discharged to a Skilled Nursing Facility After Acute Care Hospitalization.

BACKGROUND: After discharge from an acute care hospitalization, patients with cancer may choose to pursue rehabilitative care in a skilled nursing facility (SNF). The objective of this study was to examine receipt of anticancer therapy, death, readmission, and hospice use among patients with cancer who discharge to an SNF compared with those who are functionally able to discharge to home or home with home healthcare in the 6 months after an acute care hospitalization. METHODS: A population-based cohort study was conducted using the SEER-Medicare database of patients with stage II-IV colorectal, pancreatic, bladder, or lung cancer who had an acute care hospitalization between 2010 and 2013. A total of 58,770 cases were identified and patient groups of interest were compared descriptively using means and standard deviations for continuous variables and frequencies and percentages for categorical variables. Logistic regression was used to compare patient groups, adjusting for covariates. RESULTS: Of patients discharged to an SNF, 21%, 17%, and 2% went on to receive chemotherapy, radiotherapy, and targeted chemotherapy, respectively, compared with 54%, 28%, and 6%, respectively, among patients discharged home. Fifty-six percent of patients discharged to an SNF died within 6 months of their hospitalization compared with 36% discharged home. Thirty-day readmission rates were 29% and 28% for patients discharged to an SNF and home, respectively, and 12% of patients in hospice received <3 days of hospice care before death regardless of their discharge location. CONCLUSIONS: Patients with cancer who discharge to an SNF are significantly less likely to receive subsequent oncologic treatment of any kind and have higher mortality compared with patients who discharge to home after an acute care hospitalization. Further research is needed to understand and address patient goals of care before discharge to an SNF.

Patient Navigation: Addressing Social Challenges in Dialysis Patients.

Members of racial and ethnic minority groups make up nearly 50% of US patients with end-stage kidney disease and face a disproportionate burden of socioeconomic challenges (ie, low income, job insecurity, low educational attainment, housing instability, and communication challenges) compared with non-Hispanic whites. Patients with end-stage kidney disease who face social challenges often have poor patient-centered and clinical outcomes. These challenges may have a negative impact on quality-of-care performance measures for dialysis facilities caring for primarily minority and low-income patients. One path toward improving outcomes for this group is to develop culturally tailored interventions that provide individualized support, potentially improving patient-centered, clinical, and health system outcomes by addressing social challenges. One such approach is using community-based culturally and linguistically concordant patient navigators, who can serve as a bridge between the patient and the health care system. Evidence points to the effectiveness of patient navigators in the provision of cancer care and, to a lesser extent, caring for people with chronic kidney disease and those who have undergone kidney transplantation. However, little is known about the effectiveness of patient navigators in the care of patients with kidney failure receiving dialysis, who experience a number of remediable social challenges.

Apoyo con Cariño (support with caring): RCT protocol to improve palliative care outcomes for Latinos with advanced medical illness.

Latinos are more likely to experience uncontrolled pain, and institutional death, and are less likely to engage in advance care planning. Efforts to increase access to palliative care must maximize primary palliative care and community based models to meet the ever-growing need in a culturally sensitive and congruent manner. Patient navigator interventions are community-based, culturally tailored models of care that have been successfully implemented to improve disease prevention, early diagnosis, and treatment. We have developed a patient navigation intervention to improve palliative care outcomes for seriously ill Latinos. We describe the protocol for a National Institute of Nursing Research-funded randomized controlled trial designed to determine the effectiveness of the manualized patient navigator intervention. We aim to enroll 240 Latino adults with non-cancer, advanced medical illness from both urban and rural clinical sites. Participants will be randomized to the intervention group (five palliative care patient navigator visits plus bilingual educational materials) or control group (usual care plus bilingual educational materials). Outcomes include quality of life (Functional Assessment of Chronic Illness Therapy), advance care planning (Advance Care Planning Engagement survey), pain (Brief Pain Inventory), symptom management (Edmonton Symptom Assessment Scale-revised), hospice utilization, and cost and utilization of healthcare resources. This culturally tailored, evidence-based, theory-driven, innovative patient navigation intervention has significant potential to improve palliative care for Latinos, and facilitate health equity in palliative and end-of-life care.

The Illness Experience of Undocumented Immigrants With End-stage Renal Disease.

Importance: The exclusion of undocumented immigrants from Medicare coverage for hemodialysis based on a diagnosis of end-stage renal disease (ESRD) requires physicians in some states to manage chronic illness in this population using emergent-only hemodialysis. Emergent-only dialysis is expensive and burdensome for patients. Objective: To understand the illness experience of undocumented immigrants with ESRD who lack access to scheduled hemodialysis. Design, Setting, and Participants: A qualitative, semistructured, interview study was conducted in a Colorado safety-net hospital from July 1 to December 31, 2015, with 20 undocumented immigrants (hereinafter referred to as undocumented patients) with ESRD and no access to scheduled hemodialysis. Demographic information was collected from the participants' medical records. The interviews were audiorecorded, translated, and then transcribed verbatim. The interviews were analyzed using inductive qualitative theme analysis by 4 research team members from March 1 to June 30, 2016. Main Outcomes and Measures: Themes and subthemes from semistructured interviews. Results: All 20 undocumented patients included in the study (10 men and 10 women; mean [SD] age, 51.4 [13.8] years) had been in the United States for at least 5 years preceding their diagnosis with ESRD. They described the following 4 main themes: (1) a distressing symptom burden and unpredictable access to emergent-only hemodialysis, (2) death anxiety associated with weekly episodes of life-threatening illness, (3) family and social consequences of accommodating emergent-only hemodialysis, and (4) perceptions of the health care system. Conclusions and Relevance: Undocumented patients with ESRD experience debilitating, potentially life-threatening physical symptoms and psychosocial distress resulting from emergent-only hemodialysis. States excluding undocumented immigrants with ESRD from scheduled dialysis should reconsider their policies.

How U.S. Doctors Die: A Cohort Study of Healthcare Use at the End of Life.

OBJECTIVES: To compare healthcare use in the last months of life between physicians and nonphysicians in the United States. DESIGN: A retrospective observational cohort study. SETTING: United States. PARTICIPANTS: Fee-for-service Medicare beneficiaries: decedent physicians (n = 9,947) and a random sample of Medicare decedents (n = 192,006). MEASUREMENTS: Medicare Part A claims data from 2008 to 2010 were used to measure days in the hospital and proportion using hospice in the last 6 months of life as primary outcome measures adjusted for sociodemographic characteristics and regional variations in health care. RESULTS: Inpatient hospital use in the last 6 months of life was no different between physicians and nonphysicians, although more physicians used hospice and for longer (using the hospital: odds ratio (OR) = 0.98, 95% confidence interval (CI) = 0.93-1.04; hospital days: mean difference 0.26, P = .14); dying in the hospital: OR = 0.99, 95% CI = 0.95-1.04; intensive care unit (ICU) or critical care unit (CCU) days: mean difference 0.35 more days for physicians, P < .001); using hospice: OR = 1.23, 95% CI = 1.18-1.29; number of days in hospice: mean difference 2.06, P < .001). CONCLUSION: This retrospective, observational study is subject to unmeasured confounders and variation in coding practices, but it provides preliminary evidence of actual use. U.S. physicians were more likely to use hospice and ICU- or CCU-level care. Hospitalization rates were similar.

Barriers and Facilitators to Scaling Up Outpatient Palliative Care.

BACKGROUND: The Institute of Medicine recommends people with serious advanced illness have access to skilled palliative care. However, the predominant delivery model of nonhospice palliative care is inpatient, consultative care focused on the end of life, with a small specialist palliative care workforce. OBJECTIVE: The study objective was to understand organizational factors that could influence the adoption and scale-up of outpatient palliative care in chronic advanced illness, using the example of heart failure. METHODS: This was a cross-sectional qualitative study. Participants were 17 health care providers and local, regional, and national health system leaders from the Veterans Health Administration (VHA) who were considering whether and how to adopt and sustain outpatient palliative care. Individual interviews using semistructured questions assessed domains of the Consolidated Framework for Implementation Science. RESULTS: Most providers and leaders perceived outpatient palliative care as high priority in the VHA given its patient-centeredness and potential to decrease health care use and costs associated with conditions like heart failure. They also supported a collaborative care team model of outpatient palliative care delivery where a palliative care specialist collaborates with medical nurses and social workers. They reported lack of performance measures/incentives for patient-centered care processes and outcomes as a potential barrier to implementation. Features of outpatient palliative care viewed as important for successful adoption and scale-up included coordination and communication with other providers, ease of integration into existing programs, and evidence of improving quality of care while not substantially increasing overall health care costs. CONCLUSION: Incentives such as performance measures and collaboration with local VHA providers and leaders could improve adoption and scale-up of outpatient palliative care.

Apoyo con Cariño: a pilot randomized controlled trial of a patient navigator intervention to improve palliative care outcomes for Latinos with serious illness.

CONTEXT: Latinos experience significant health disparities at the end of life compared with non-Latinos. OBJECTIVES: To determine the feasibility of a patient navigator intervention to improve palliative care outcomes for Latino adults with serious illness. METHODS: This was a pilot randomized controlled trial that included 64 Latino adults with life-limiting illness randomized to an intervention or a control group. All participants received a packet of linguistically matched materials on palliative care. In addition, intervention participants received up to five home visits from the bilingual, bicultural patient navigator. Visits focused on addressing barriers to palliative care through education, activation, and culturally tailored messaging. Outcomes included feasibility and advance care planning rates, documentation of pain management discussions in the medical record, and hospice utilization. RESULTS: Of the 32 patients randomized to the intervention arm, 81% had at least one home visit (range 1-5) with the patient navigator. Overall, advance care planning was higher in the intervention group (47% [n = 15] vs. 25% [n = 8], P = 0.06), and 79% of intervention participants had a discussion about pain management documented in their medical record vs. 54% of control patients (P = 0.05). Hospice enrollment between the two groups (n = 18 decedents) was similar (n = 7 intervention vs. n = 6 control); length of stay in the intervention group was 36.4 ± 51.6 vs. 19.7 ± 33.6 days for control patients (P = 0.39). CONCLUSION: A culturally tailored patient navigator intervention was feasible and suggests improved palliative care outcomes for Latinos facing advanced medical illness, justifying a fully powered randomized controlled trial.

A Hospitalist mentoring program to sustain interest in healthcare careers in under-represented minority undergraduates.

BACKGROUND: Ethnic minorities in the United States have decreased access to healthcare and disproportionately high morbidity and mortality. There has been minimal growth in the number of minority physicians despite their important role in reducing health disparities. Under-represented minority (URM) undergraduate students are 50% less likely to maintain interest in medical careers. METHODS: Denver Health and the University of Colorado, Denver enrolled URM students interested in healthcare careers in a year-long, comprehensive program called the Healthcare Interest Program (HIP) that included pairing each student with a hospitalist for mentoring and job shadowing. At the end of the first year of HIP, students were surveyed, and 2 years later they were contacted for follow-up. RESULTS: Twenty-three students enrolled and all completed the program. Nineteen (83%) completed the survey and all "strongly agreed" that participating in HIP expanded their perceptions of what they might accomplish and increased their confidence in their ability to participate in a healthcare profession. Two-year follow-up was available for 21 students (91%). Twenty (95%) remained committed to a career in healthcare, 18 (86%) had graduated, and 6 (29%) were enrolled in postgraduate healthcare training. CONCLUSION: The interest of undergraduate minority prehealth students in healthcare careers may be maintained by participation in a multifaceted, year-long mentoring program such as HIP.