Developing a national implementation strategy to accelerate uptake of evidence-based family caregiver support in U.S. cancer centers.

OBJECTIVE: Characterize key factors and training needs of U.S. cancer centers in implementing family caregiver support services. METHODS: Sequential explanatory mixed methods design consisting of: (1) a national survey of clinicians and administrators from Commission-on-Cancer-accredited cancer centers (N = 238) on factors and training needed for establishing new caregiver programs and (2) qualitative interviews with a subsample of survey respondents (N = 30) to elicit feedback on survey findings and the outline of an implementation strategy to facilitate implementation of evidence-based family caregiver support (the Caregiver Support Accelerator). Survey data was tabulated using descriptive statistics and transcribed interviews were analyzed using thematic analysis. RESULTS: Top factors for developing new caregiver programs were that the program be: consistent with the cancer center's mission and strategic plan (87%), supported by clinic leadership (86.5%) and providers and staff (85.7%), and low cost or cost effective (84.9%). Top training needs were how to: train staff to implement programs (72.3%), obtain program materials (63.0%), and evaluate program outcomes (62.6%). Only 3.8% reported that no training was needed. Qualitative interviews yielded four main themes: (1) gaining leadership, clinician, and staff buy-in and support is essential; (2) cost and clinician burden are major factors to program implementation; (3) training should help with adapting and marketing programs to local context and culture; and (4) the Accelerator strategy is comprehensive and would benefit from key organizational partnerships and policy standards. CONCLUSION: Findings will be used to inform and refine the Accelerator implementation strategy to facilitate the adoption and growth of evidence-based cancer caregiver support in U.S. cancer centers.

The Experience of Black Patients With Serious Illness in the United States: A Scoping Review.

CONTEXT: Black patients experience health disparities in access and quality of care. OBJECTIVE: To identify and characterize the literature on the experiences of Black patients with serious illness across multiple domains - physical, spiritual, emotional, cultural, and healthcare utilization. METHODS: We conducted a scoping review of US literature from the last ten years using the PRISMA-ScR framework. PubMed was used to conduct a comprehensive search, followed by recursive citation searches in Scopus. Two reviewers screened the resulting citations to determine eligibility for inclusion and extracted data, including study methods and sample populations. The included articles were categorized by topic and then further organized using the Social-Ecological Model. RESULTS: From an initial review of 433 articles, a final sample of 160 were included in the scoping review. The majority of articles used quantitative research methods and were published in the last four years. Articles were categorized into 20 topics, ranging from Access to Hospice and Utilization (42 articles) to Community Outreach and Services (three articles). Three-quarters (76.3%) of the included studies provided evidence that racial disparities exist in serious illness care, while less than one-quarter examined causes of disparities. The most common Model levels were the Health Care System (102 articles) and Individual (71 articles) levels. CONCLUSION: More articles focused on establishing evidence of disparities between Black and White patients than on understanding their root causes. Further investigation is warranted to understand how factors at the patient, provider, health system, and society levels interact to remediate disparities.

Palliative Care Early in the Care Continuum among Patients with Serious Respiratory Illness: An Official ATS/AAHPM/HPNA/SWHPN Policy Statement.

Background: Patients with serious respiratory illness and their caregivers suffer considerable burdens, and palliative care is a fundamental right for anyone who needs it. However, the overwhelming majority of patients do not receive timely palliative care before the end of life, despite robust evidence for improved outcomes. Goals: This policy statement by the American Thoracic Society (ATS) and partnering societies advocates for improved integration of high-quality palliative care early in the care continuum for patients with serious respiratory illness and their caregivers and provides clinicians and policymakers with a framework to accomplish this. Methods: An international and interprofessional expert committee, including patients and caregivers, achieved consensus across a diverse working group representing pulmonary-critical care, palliative care, bioethics, health law and policy, geriatrics, nursing, physiotherapy, social work, pharmacy, patient advocacy, psychology, and sociology. Results: The committee developed fundamental values, principles, and policy recommendations for integrating palliative care in serious respiratory illness care across seven domains: 1) delivery models, 2) comprehensive symptom assessment and management, 3) advance care planning and goals of care discussions, 4) caregiver support, 5) health disparities, 6) mass casualty events and emergency preparedness, and 7) research priorities. The recommendations encourage timely integration of palliative care, promote innovative primary and secondary or specialist palliative care delivery models, and advocate for research and policy initiatives to improve the availability and quality of palliative care for patients and their caregivers. Conclusions: This multisociety policy statement establishes a framework for early palliative care in serious respiratory illness and provides guidance for pulmonary-critical care clinicians and policymakers for its proactive integration.

Switching Between Medicare Advantage And Traditional Medicare Before And After The Onset Of Functional Disability.

Medicare Advantage (MA) plans have increasing flexibility to provide nonmedical services to support older adults aging in place in the community. However, prior research has suggested that enrollees with functional disability (hereafter, "disability") were more likely than those without disability to leave MA plans. This indicates that MA plans might not meet the needs of older adults with disability. We used data for 2011-16 from the National Health and Aging Trends Study linked to Medicare claims to measure and characterize switches in either direction between Medicare Advantage and traditional Medicare in the twelve months before and after onset of disability. While the rate of switches from Medicare Advantage to traditional Medicare increased slightly after disability onset, people with greater levels of disability were more likely to switch to traditional Medicare, compared to those with lower levels: 36 percent of those who switched from Medicare Advantage to traditional Medicare needed help with two or more activities of daily living, compared to 14.3 percent of those who switched from traditional Medicare to Medicare Advantage. This indicates the potential benefit of including functional measures in MA plan risk adjustment and quality measures. Furthermore, the highest-need older adults with disability may experience lower-quality care in Medicare Advantage and thus leave before accessing the program's expanded benefits.

Drivers of care costs and quality in the last 3 months of life among older people receiving palliative care: A multinational mortality follow-back survey across England, Ireland and the United States.

BACKGROUND: Care costs rise towards the end of life. International comparison of service use, costs and care experiences can inform quality and improve access. AIM: The aim of this study was to compare health and social care costs, quality and their drivers in the last 3 months of life for older adults across countries. Null hypothesis: no difference between countries. DESIGN: Mortality follow-back survey. Costs were calculated from carers' reported service use and unit costs. SETTING: Palliative care services in England (London), Ireland (Dublin) and the United States (New York, San Francisco). PARTICIPANTS: Informal carers of decedents who had received palliative care participated in the study. RESULTS: A total of 767 questionnaires were returned: 245 in England, 282 in Ireland and 240 in the United States. Mean care costs per person with cancer/non-cancer were US$37,250/US$37,376 (the United States), US$29,065/US$29,411 (Ireland), US$15,347/US$16,631 (England) and differed significantly (F = 25.79/14.27, p < 0.000). Cost distributions differed and were most homogeneous in England. In all countries, hospital care accounted for > 80% of total care costs; community care 6%-16%, palliative care 1%-15%; 10% of decedents used ~30% of total care costs. Being a high-cost user was associated with older age (>80 years), facing financial difficulties and poor experiences of home care, but not with having cancer or multimorbidity. Palliative care services consistently had the highest satisfaction. CONCLUSION: Poverty and poor home care drove high costs, suggesting that improving community palliative care may improve care value, especially as palliative care expenditure was low. Major diagnostic variables were not cost drivers. Care costs in the United States were high and highly variable, suggesting that high-cost low-value care may be prevalent.

Predictors of reliably high-value end-of-life care.

PURPOSE OF REVIEW: Care near the end of life is expensive and frequently not aligned with the expressed preferences of decedents, creating an opportunity to improve value, or increase quality while lowering cost. This review examines publications from 2017 and 2018 on interventions and policies associated with high-value end-of-life care. Innovations in video and web-based advance care planning are promising to improve preference-congruent care at low cost. RECENT FINDINGS: The patterns of care within hospice and in particular increased investment in patient care in hospice are shown to improve value. A meta-analysis demonstrated the role of inpatient palliative care consultations in decreasing hospitalization costs, as did several studies on inpatient palliative care units. Internationally, a range of home-based palliative care programs, implemented at the population level, demonstrated cost savings and reduced intensive care near the end of life. Finally, public policies that funded medical and long-term care and address broader inequalities were demonstrated to decrease low-value care near the end of life. SUMMARY: This review demonstrates the efficacy of a range of approaches to improve value of care at the end of life, both within the health system and across public policy sectors.

Accountability for Community-Based Programs for the Seriously Ill.

Innovation is needed to improve care of the seriously ill, and there are important opportunities as we transition from a volume- to value-based payment system. Not all seriously ill are dying; some recover, while others are persistently functionally impaired. While we innovate in service delivery and payment models for the seriously ill, it is important that we concurrently develop accountability that ensures a focus on high-quality care rather than narrowly focusing on cost containment. The Gordon and Betty Moore Foundation convened a meeting of 45 experts to arrive at guiding principles for measurement, create a starter measurement set, specify a proposed definition of the denominator and its refinement, and identify research priorities for future implementation of the accountability system. A series of articles written by experts provided the basis for debate and guidance in formulating a path forward to develop an accountability system for community-based programs for the seriously ill, outlined in this article. As we innovate in existing population-based payment programs such as Medicare Advantage and develop new alternative payment models, it is important and urgent that we develop the foundation for accountability along with actionable measures so that the healthcare system ensures high-quality person- and family-centered care for persons who are seriously ill.

Improving Quality of Care for Seriously Ill Patients: Opportunities for Hospitalists.

As the shift to value-based payment accelerates, hospitals are under increasing pressure to deliver high-quality, efficient services. Palliative care approaches improve quality of life and family well-being, and in doing so, reduce resource utilization and costs. Hospitalists frequently provide palliative care interventions to their patients, including pain and symptom management and engaging in conversations with patients and families about the realities of their illness and treatment plans that align with their priorities. Hospitalists are ideally positioned to identify patients who could most benefit from palliative care approaches and often refer the most complex cases to specialty palliative care teams. Though hospitalists are frequently called upon to provide palliative care, most lack formal training in these skills, which have not typically been included in medical education. Additional training in communication, safe and effective symptom management, and other palliative care knowledge and skills are available in both in-person and online formats.

A Person-Centered, Registry-Based Learning Health System for Palliative Care: A Path to Coproducing Better Outcomes, Experience, Value, and Science.

BACKGROUND: Palliative care offers an approach to the care of people with serious illness that focuses on quality of life and aligning care with individual and family goals, and values in the context of what is medically achievable. OBJECTIVE: Measurement of the impact of palliative care is critical for determining what works for which patients in what settings, to learn, improve care, and ensure access to high value care for people with serious illness. METHODS: A learning health system that includes patients and families partnering with clinicians and care teams, is directly linked to a registry to support networks for improvement and research, and offers an ideal framework for measuring what matters to a range of stakeholders interested in improving care for this population. MEASUREMENTS: Measurement focuses on the individual patient and family experience as the fundamental outcome of interest around which all care delivery is organized. RESULTS: We describe an approach to codesigning and implementing a palliative care registry that functions as a learning health system, by combining patient and family inputs and clinical data to support person-centered care, quality improvement, accountability, transparency, and scientific research. DISCUSSION: The potential for a palliative care learning health system that, by design, brings together enriched information environments to support coproduction of healthcare and facilitated peer networks to support patients and families, collaborative clinician networks to support palliative care program improvement, and collaboratories to support research and the application of research to benefit individual patients is immense.

Hospice Care for Patients With Dementia in the United States: A Longitudinal Cohort Study.

BACKGROUND: Patients with dementia form an increasing proportion of those entering hospice care. Little is known about the types of hospices serving patients with dementia and the patterns of hospice use, including timing of hospice disenrollment between patients with and without dementia. OBJECTIVES: To characterize the hospices that serve patients with dementia, to compare patterns of hospice disenrollment for patients with dementia and without dementia, and to evaluate patient-level and hospice-level characteristics associated with hospice disenrollment. METHODS: We used data from a longitudinal cohort study (2008-2011) of Medicare beneficiaries (n = 149,814) newly enrolled in a national random sample of hospices (n = 577) from the National Hospice Survey and followed until death (84% response rate). RESULTS: A total of 7328 patients (4.9%) had a primary diagnosis of dementia. Hospices caring for patients with dementia were more likely to be for-profit, larger sized, provide care for more than 5 years, and serve a large (>30%) percentage of nursing home patients. Patients with dementia were less likely to disenroll from hospice in conjunction with an acute hospitalization or emergency department visit and more likely to disenroll from hospice after long enrollment periods (more than 165 days) as compared with patients without dementia. No significant difference was found between patients with and without dementia for disenrollment after shorter enrollment periods (less than 165 days). In the multivariable analyses, patients were more likely to be disenrolled after 165 days if they were served by smaller hospices and hospices that served a small percentage of nursing home patients. CONCLUSION: Patients with dementia are significantly more likely to be disenrolled from hospice following a long enrollment period compared with patients without dementia. As the number of individuals with dementia choosing hospice care continues to grow, it is critical to address potential barriers to the provision of quality palliative care for this population near the end of life.

A National Strategy For Palliative Care.

In 2014 the World Health Organization called for palliative care to be integrated as an essential element of the health care continuum. Yet in 2017 US palliative care services are found largely in hospitals, and hospice care, which is delivered primarily in the home, is limited to people who are dying soon. The majority of Americans with a serious illness are not dying; are living at home, in assisted living facilities, or in nursing homes; and have limited access to palliative care. Most health care providers lack knowledge about and skills in pain and symptom management, communication, and care coordination, and both the public and health professionals are only vaguely aware of the benefits of palliative care and how and when to access it. The lack of policy supports for palliative care contributes to preventable suffering and low-value care. In this article we outline the need for a national palliative care strategy to ensure reliable access to high-quality palliative care for Americans with serious medical illnesses. We review approaches employed by other countries, list the participants needed to develop and implement an actionable strategy, and identify analogous US national health initiatives to inform a process for implementing the strategy.

Prospective Cohort Study of Hospitalized Adults With Advanced Cancer: Associations Between Complications, Comorbidity, and Utilization.

BACKGROUND: Inpatient hospital stays account for more than a third of direct medical cancer care costs. Evidence on factors driving these costs can inform planning of services, as well as consideration of equity in access. OBJECTIVE: To measure the association between hospital costs, and demographic, clinical, and system factors, for a cohort of adults with advanced cancer. DESIGN: Prospective multisite cohort study. SETTING: Four medical and cancer centers. PATIENTS: Adults with advanced cancer admitted to a participating hospital between 2007 and 2011, excluding those with dementia. Final analytic sample included 1020 patients. METHODS: With receipt of palliative care controlled for, the associations between hospital cost and patient factors were estimated. Factors covered the domains of demographics (age, sex, race), socioeconomics and systems (education, insurance, living will, proxy), clinical care (diagnoses, complications deemed to pose a threat to life or bodily functions, comorbidities, symptom burden, activities of daily living), and prior healthcare utilization (home help, analgesic prescribing). OUTCOME MEASURE: Direct hospital costs. RESULTS: A major (markedly abnormal) complication (+$8267; P < 0.01), a minor but not a major complication (+$5289; P < 0.01), and number of comorbidities (+$852; P < 0.01) were associated with higher cost, and admitting diagnosis of electrolyte disorders (-$4759; P = 0.01) and increased age (-$53; P = 0.03) were associated with lower cost. CONCLUSIONS: Complications and comorbidity burden drive inhospital utilization for adults with advanced cancer. There is little evidence of sociodemographic associations and no apparent impact of advance directives. Attempts to control growth of hospital cancer costs require consideration of how the most resource-intensive patients are identified promptly and prioritized for cost-effective care. Journal of Hospital Medicine 2017;12:407-413.

Cost analysis of a prospective multi-site cohort study of palliative care consultation teams for adults with advanced cancer: Where do cost-savings come from?

BACKGROUND: Studies report cost-savings from hospital-based palliative care consultation teams compared to usual care only, but drivers of observed differences are unclear. AIM: To analyse cost-differences associated with palliative care consultation teams using two research questions: (Q1) What is the association between early palliative care consultation team intervention, and intensity of services and length of stay, compared to usual care only? (Q2) What is the association between early palliative care consultation team intervention and day-to-day hospital costs, compared to a later intervention? DESIGN: Prospective multi-site cohort study (2007-2011). Patients who received a consultation were placed in the intervention group, those who did not in the comparison group. Intervention group was stratified by timing, and groups were matched using propensity scores. SETTING/PARTICIPANTS: Adults admitted to three US hospitals with advanced cancer. Principle analytic sample contains 863 patients ( nUC = 637; nPC EARLY = 177; nPC LATE = 49) discharged alive. RESULTS: Cost-savings from early palliative care accrue due to both reduced length of stay and reduced intensity of treatment, with an estimated 63% of savings associated with shorter length of stay. A reduction in day-to-day costs is observable in the days immediately following initial consult but does not persist indefinitely. A comparison of early and late palliative care consultation team cost-effects shows negligible difference once the intervention is administered. CONCLUSION: Reduced length of stay is the biggest driver of cost-saving from early consultation for patients with advanced cancer. Patient- and family-centred discussions on goals of care and transition planning initiated by palliative care consultation teams may be at least as important in driving cost-savings as the reduction of unnecessary tests and pharmaceuticals identified by previous studies.

Scalable principles of community-based high-value care for seriously ill individuals: Diamonds in the rough.

Early, integrated palliative care has been shown to improve quality of life and reduce utilization in both inpatient and outpatient settings. As health systems shift to risk-based payment structures, palliative care will play an increasing role in improving value of care outside of the hospital. Based on successful models of community-based palliative care, we identify six principles - interdisciplinary team-based care; 24/7 access and responsiveness; concurrent palliative care with disease-directed treatment; targeting services to high-risk patients; integrated medical and social supports; and caregiver support - that are widely implemented because of their impact on improving value for seriously ill individuals.