Diagnosing Shosha: literature as a lens to view disease and history.

In recent decades, physicians have diagnosed fictional and non-fictional characters through portraits, biographies and writing. We argue that such an exercise can be beneficial for a uniquely health humanities reason-better understanding of our current world and the social determinants of health. Drawing on the method of health and social justice studies, we explore the character of Shosha, who appears repeatedly in the writings of Nobel Prize winner Isaac Bashevis Singer. Singer's strong story-telling skill and commitment to writing about the Jewish communities of prewar Poland in vivid detail preserve a slice of history, ensure that future generations will better understand what was destroyed by Nazi extermination policies, and provide lessons for modern political, hunger and war threats to human health. Shosha suffers from a lifelong debilitating disease that neither Singer nor subsequent commentaries ever name. The authors focus first on diagnosing the disease by consulting medical literature and experts. They then examine the value and pitfalls of this exercise and suggest that the lessons of understanding the disease historically, for teaching physicians how to recognise diseases rooted in war and poverty, and for enlightening all of us to the risks faced in human health by a world increasingly taking up arms and sliding towards fascism make diagnosing Shosha necessary and meaningful.

Effects of Different Transitional Care Strategies on Outcomes after Hospital Discharge-Trust Matters, Too.

BACKGROUND: As health systems shift toward value-based care, strategies to reduce readmissions and improve patient outcomes become increasingly important. Despite extensive research, the combinations of transitional care (TC) strategies associated with best patient-centered outcomes remain uncertain. METHODS: Using an observational, prospective cohort study design, Project ACHIEVE sought to determine the association of different combinations of TC strategies with patient-reported and postdischarge health care utilization outcomes. Using purposive sampling, the research team recruited a diverse sample of short-term acute care and critical access hospitals in the United States (N = 42) and analyzed data on eligible Medicare beneficiaries (N = 7,939) discharged from their medical/surgical units. Using both hospital- and patient-reported TC strategy exposure data, the project compared patients "exposed" to each of five overlapping groups of TC strategies to their "control" counterparts. Primary outcomes included 30-day hospital readmissions, 7-day postdischarge emergency department (ED) visits and patient-reported physical and mental health, pain, and participation in daily activities. RESULTS: Participants averaged 72.3 years old (standard deviation =10.1), 53.4% were female, and most were White (78.9%). Patients exposed to one TC group (Hospital-Based Trust, Plain Language, and Coordination) were less likely to have 30-day readmissions (risk ratio [RR], 0.72; 95% confidence interval [CI] = 0.57-0.92, p < 0.001) or 7-day ED visits (RR, 0.72; 95% CI, 0.55-0.93, p < 0.001) and more likely to report excellent physical and mental health, greater participation in daily activities, and less pain (RR ranged from 1.11 to 1.15, p < 0.01). CONCLUSION: In concert with care coordination activities that bridge the transition from hospital to home, hospitals' clear communication and fostering of trust with patients were associated with better patient-reported outcomes and reduced health care utilization.

Development and psychometric properties of surveys to assess patient and family caregiver experience with care transitions.

BACKGROUND: The purpose of this study was to develop and administer surveys that assess patient and family caregiver experiences with care transitions and examine the psychometric properties of the surveys. The surveys were designed to ask about 1) the transitional care services that matter most to patients and their caregivers and 2) care outcomes, including the overall quality of transitional care they received, patient self-reported health, and caregiver effort/stress. METHODS: Survey items were developed based on a review of the literature, existing surveys, focus groups, site visits, stakeholder and expert input, and patient and caregiver cognitive interviews. We administered mail surveys with telephone follow up to patients recently discharged from 43 U.S. hospitals. Patients identified the caregivers who helped them during their hospital stay (Time 1 caregiver) and when they were home (Time 2 caregiver). Time 1 and Time 2 caregivers were surveyed by telephone only. The psychometric properties of the survey items and outcome composite measures were examined for each of the three surveys. Items that performed poorly across multiple analyses, including those with low variability and/or a high missing data, were dropped except when they were conceptually important. RESULTS: The analysis datasets included responses from 9282 patients, 1245 Time 1 caregivers and 1749 Time 2 caregivers. The construct validity of the three proposed outcome composite measures-Overall Quality of Transitional Care (patient and caregiver surveys), Patient Overall Health (patient survey) and Caregiver Effort/Stress (caregiver surveys) -was supported by acceptable exploratory factor analysis results and acceptable internal consistency reliability. Site-level reliability was acceptable for the two patient outcome composite measures, but was low for Caregiver Effort/Stress (< 0.70). In all surveys, the Overall Quality of Transitional Care outcome composite measure was significantly correlated with other outcome composite measures and most of the single-item measures. CONCLUSIONS: Overall, the final patient and caregiver surveys are psychometrically sound and can be used by health systems, hospitals, and researchers to assess the quality of care transitions and related outcomes. Results from these surveys can be used to improve care transitions, focusing on what matters most to patients and their family caregivers.

Vulnerable Children in a Dual Epidemic.

Two epidemics-Covid-19 and opioid use disorder (OUD) -are creating short- and long-term mental and physical health risks for vulnerable children and adolescents. Information about the risks to children from exposure to the coronavirus is still fragmentary, but even many healthy children are not getting appropriate health care, such as vaccinations or monitoring of developmental milestones during the Covid-19 pandemic. Children living in poverty are at heightened risk. Youngsters who are already dealing with OUD in their families-2.2 million as of 2017-face serious consequences stemming from trauma and stress. Although not officially designated by the Centers for Disease Control and Prevention as "adverse childhood experiences" ("ACEs"), these situations meet the CDC's criteria for inclusion, such as death or separation from a parent. It is important to recognize and meet the needs of all these children now and not just when the long-term consequences become apparent.

Patience, Presence, and Persistence: What It Takes to Be an Alzheimer's Caregiver.

These stories convey the diversity of AD caregivers but also the similarities of the difficulties they experience over years of adjusting to the increasing challenges of the tasks. The authors vividly express both the toll caregiving takes; many also derive positive feelings from the experience. Among the bioethical issues raised in the stories are the failure of professionals to utilize caregivers' intimate knowledge of the person, the tension between lying to and comforting the person, choices at the end of life, and the still-emerging impact of genetic and biomarker information about the caregiver's own susceptibility to the disease. It is common for caregivers and professionals to characterize the relationship of caregiver and parent as "role reversal." This commentary calls for a new look at that framework, which fails to recognize the many differences between caregiving for a child and for a person with AD.

Care Transitions From Patient and Caregiver Perspectives.

PURPOSE: Despite concerted actions to streamline care transitions, the journey from hospital to home remains hazardous for patients and caregivers. Remarkably little is known about the patient and caregiver experience during care transitions, the services they need, or the outcomes they value. The aims of this study were to (1) describe patient and caregiver experiences during care transitions and (2) characterize patient and caregiver desired outcomes of care transitions and the health services associated with them. METHODS: We interviewed 138 patients and 110 family caregivers recruited from 6 health networks across the United States. We conducted 34 homogenous focus groups (103 patients, 65 caregivers) and 80 key informant interviews (35 patients, 45 caregivers). Audio recordings were transcribed and analyzed using principles of grounded theory to identify themes and the relationship between them. RESULTS: Patients and caregivers identified 3 desired outcomes of care transition services: (1) to feel cared for and cared about by medical providers, (2) to have unambiguous accountability from the health care system, and (3) to feel prepared and capable of implementing care plans. Five care transition services or provider behaviors were linked to achieving these outcomes: (1) using empathic language and gestures, (2) anticipating the patient's needs to support self-care at home, (3) collaborative discharge planning, (4) providing actionable information, and (5) providing uninterrupted care with minimal handoffs. CONCLUSIONS: Clear accountability, care continuity, and caring attitudes across the care continuum are important outcomes for patients and caregivers. When these outcomes are achieved, care is perceived as excellent and trustworthy. Otherwise, the care transition is experienced as transactional and unsafe, and leaves patients and caregivers feeling abandoned by the health care system.

Components of Comprehensive and Effective Transitional Care.

Transitional care (TC) has received widespread attention from researchers, health system leaders, clinicians, and policy makers as they attempt to improve health outcomes and reduce preventable hospital readmissions, yet little is known about the critical elements of effective TC and how they relate to patients' and caregivers' needs and experiences. To address this gap, the Patient-Centered Outcomes Research Institute (PCORI) funded a national study, Achieving patient-centered Care and optimized Health In care transitions by Evaluating the Value of Evidence (Project ACHIEVE). A primary aim of the study is the identification of TC components that yield desired patient and caregiver outcomes. Project ACHIEVE established a multistakeholder workgroup to recommend essential TC components for vulnerable Medicare beneficiaries. Guided by a review of published evidence, the workgroup identified and defined a preliminary set of components and then analyzed how well the set aligned with real-world patients' and caregivers' experiences. Through this process, the workgroup identified eight TC components: patient engagement, caregiver engagement, complexity and medication management, patient education, caregiver education, patients' and caregivers' well-being, care continuity, and accountability. Although the degree of attention given to each component will vary based on the specific needs of patients and caregivers, workgroup members agree that health systems need to address all components to ensure optimal TC for all Medicare beneficiaries.

Public health imperative of the 21st century: innovations in palliative care systems, services, and supports to improve health and well-being of older americans.

A primary aim of federal aging and health policy must be promoting innovations in palliative care systems, services, and supports that improve the experience of growing old in America. Older adults must contend today with increasing burden over the life course often as the result of life-limiting chronic pain and chronic illnesses as well as social and economic factors beyond their control. These burdens are frequently shared with unpaid family caregivers who provide significant uncompensated medical care and social support to their loved ones. Enjoyment of the highest attainable standard of physical and mental health, recognized as a fundamental human right under international law, remains a goal for all older adults and encompasses the right to palliative care. For many older Americans, especially vulnerable subgroups who face health and pain disparities, however, this goal remains elusive. A public health strategy for implementing palliative care policy interventions will help to build age-friendly environments, assure the availability and accessibility of palliative systems of care, essential medicines, and an adequate generalist-level workforce, and sustain diffusion of innovation across all levels of health and social provision. The 2015 White House Conference on Aging must make these realignments a policy priority in order to foster social and economic development for all older Americans.

Dealing with the long-term social implications of research.

Biomedical and behavioral research may affect strongly held social values and thereby create significant controversy over whether such research should be permitted in the first place. Institutional review boards (IRBs) responsible for protecting the rights and welfare of participants in research are sometimes faced with review of protocols that have significant implications for social policy and the potential for negative social consequences. Although IRB members often raise concerns about potential long-term social implications in protocol review, federal regulations strongly discourage IRBs from considering them in their decisions. Yet IRBs often do consider the social implications of research protocols and sometimes create significant delays in initiating or even prevent such research. The social implications of research are important topics for public scrutiny and professional discussion. This article examines the reasons that the federal regulations preclude IRBs from assessing the social risks of research, and examines alternative approaches that have been used with varying success by national advisory groups to provide such guidance. The article concludes with recommendations for characteristics of a national advisory group that could successfully fulfill this need, including sustainability, independence, diverse and relevant expertise, and public transparency.

Bridging troubled waters: family caregivers, transitions, and long-term care.

Families are the bedrock of long-term care, but policymakers have traditionally considered them "informal" caregivers, as they are not part of the formal paid caregiving workforce. As chronic and long-term care systems have become more complex and as more demanding tasks have been shifted to families, this view is no longer sustainable. The care transition process offers a critical opportunity to treat family caregivers as important care partners. Enhancing their involvement, training, and support will contribute to reducing unnecessary rehospitalizations and improving patient outcomes. The contributions and experiences of family caregivers should be considered in gathering information to shape policies and practice; training health care professionals; developing programs; and reforming financing.