Implementation Challenges for a Multisite Advance Care Planning Pragmatic Trial: Lessons Learned.

BACKGROUND/PROBLEM: Advance care planning (ACP) pragmatic trials are needed. PROPOSED SOLUTION: We determined key system-level activities to implement ACP interventions for a cluster-randomized pragmatic trial. We identified patients with serious illness from 50 primary care clinics across three University of California health systems using a validated algorithm. If patients lacked documented ACP within the last 3 years, they were eligible for an intervention: (Arm 1) an advance directive (AD); (Arm 2) AD + PREPAREforYourCare.org; (Arm 3) AD + PREPARE + lay health navigator outreach. Triggered by an appointment, we mailed and sent interventions through automated electronic health record (EHR) messaging. We collaborated with patients/caregivers, clinicians, payors, and national/health system leader advisors. We are currently finalizing 24 months follow-up data. OUTCOMES/METHODS: We used the Consolidated Framework for Implementation Research (CFIR) and Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) frameworks to track secular trends and implementation efforts. KEY MESSAGE/RESULTS: Required multisite, system-level activities: 1) obtaining leadership, legal/privacy, and EHR approvals; 2) standardizing ACP documentation; 3) providing clinician education; 3) validating an automated serious illness identification algorithm; 4) standardizing ACP messaging with input from over 100 key advisors; 5) monitoring secular trends (e.g., COVID); and 6) standardizing ACP workflows (e.g., scanned ADs). Of 8707 patients with serious illness, 6883 were eligible for an intervention. Across all arms, 99% received the mailed intervention, 78.3% had an active patient portal (64.2% opened intervention), and 90.5% of arm three patients (n = 2243) received navigator outreach. LESSONS LEARNED: Implementing a multisite health system-wide ACP program and pragmatic trial, with automated EHR-based cohort identification and intervention delivery, requires a high level of multidisciplinary key advisor engagement, standardization, and monitoring. These activities provide guidance for the implementation of other large-scale, population-based ACP efforts.

Recognising Basic Health Literacy Capabilities: An Explorative Study on the Relevance of Health-Related Information in the Support of People with Profound Intellectual and Multiple Disabilities.

Background: People with profound intellectual disabilities represent a vulnerable and heterogeneous population whose health-related needs and questions often remain unheard. One reason for this is that they are usually unable to participate in verbal communication. However, there is also a lack of suitable approaches to communicate health-related information to them according to their capabilities. The research presented in this paper addresses this gap. Methods: Following grounded theory methodology, we used a multimethod approach. Based on a theoretical analysis, a Delphi study (n = 14) was conducted as a starting point to map the research field. In a second step, these findings were incorporated into an online survey targeting disability care professionals (n = 111). Three field studies supplemented the data, encompassing a variety of ethnographic methods. Results: People with PIMD have basic health-related capabilities that can improve their health literacy. Nevertheless, their support environments have to take over many health literacy-related requirements by proxy or substitution. One of the most important tasks is to engage health information in an individualised way. Conclusions: The findings underline the importance of focusing on more basic capabilities and intersubjective approaches in health literacy research and practice, especially regarding new perspectives on the inclusion of previously marginalised populations (such as people with PIMD).

A moving-window bayesian network model for assessing systemic risk in financial markets.

Systemic risk refers to the uncertainty that arises due to the breakdown of a financial system. The concept of "too connected to fail" suggests that network connectedness plays an important role in measuring systemic risk. In this paper, we first recover a time series of Bayesian networks for stock returns, which allow the direction of links among stock returns to be formed with Markov properties in directed graphs. We rank the stocks in the time series of Bayesian networks based on the topological orders of the stocks in the learned Bayesian networks and develop an order distance, a new measure with which to assess the changes in the topological orders of the stocks. In an empirical study using stock data from the Hang Seng Index in Hong Kong and the Dow Jones Industrial Average, we use the order distance to predict the extreme absolute return, which is a proxy of extreme market risks, or a signal of systemic risks, using the LASSO regression model. Our results indicate that the network statistics of the time series of Bayesian networks and the order distance substantially improve the predictability of extreme absolute returns and provide insights into the assessment of systemic risk.

Choosing to Die.

Two articles in the September-October 2022 issue of the Hastings Center Report discuss health-related reasons that people might have to actively bring their lives to an end. In one, Brent Kious considers the situation of a person who, because of illness, becomes a burden on loved ones. A person in such a situation might prefer to die, and Kious argues that, while there is no obligation to hasten one's death, the choice to do so could sometimes be reasonable. In a second article, Henri Wijsbek and Thomas Nys discuss a case in the Netherlands in which a woman with severe dementia was euthanized at a point when her advance euthanasia directive did not align with what she said, when asked, about death. Wijsbek and Nys defend the authority of her advance directive against a range of objections. In a third article, Henry Silverman and Patrick Odonkor, physicians at the University of Maryland Medical Center, where the first pig-to-human heart transplantation was performed in early 2022, develop recommendations for clinical trials of porcine heart transplantation. And an essay in the issue criticizes the allocation recommendations developed for Covid-19 vaccines by the U.S. Centers for Disease Control and Prevention's Advisory Committee on Immunization Practices.

Providing Palliative Care to Patients Throughout the State of Indiana from a Centralized Virtual Palliative Care Hub.

BACKGROUND: Access to palliative care clinicians is a limited resource. Expanding the reach of existing palliative care expertise by utilizing virtual care is one strategy to reach areas that lack access. We delivered virtual services through a centralized hub across multiple health settings and tracked outcomes. METHODS: Through a centralized virtual palliative care hub based in an urban academic health center, access to specialty palliative care was offered across homes, critical access hospitals (CAHs), and extended care facilities (ECFs) in the state of Indiana. Webpage-based platforms were used, and hardware included a cart on wheels for rural hospital sites. Data specific to palliative care were monitored for each encounter. RESULTS: Over one year, 372 patients were seen for virtual palliative care consultations, of whom 275 (73.9%) were seen in the outpatient setting (where the patient was at home or in an ECF) and 97 (26.1%) were inpatient visits performed in CAHs. Visits occurred with patients from almost all counties in Indiana. Advance directives were established for 286 (76.9%) patients seen, and 107 (28.8%) patients were referred to hospice. CONCLUSION: Specialty palliative care is a limited resource that has been further constrained by the COVID-19 pandemic. Our experience demonstrates that centralized virtual hub-based palliative care can be leveraged to provide effective, patient-centered, and compassionate care in regions without a specialist and has the potential to improve access to specialty palliative care.

(Re)Conceptualising 'good' proxy decision-making for research: the implications for proxy consent decision quality.

People who are unable to make decisions about participating in research rely on proxies to make a decision based on their wishes and preferences. However, patients rarely discuss their preferences about research and proxies find it challenging to determine what their wishes would be. While the process of informed consent has traditionally been the focus of research to improve consent decisions, the more conceptually complex area of what constitutes 'good' proxy decision-making for research has remained unexplored. Interventions are needed to improve and support proxy decision-making for research but are hampered by a lack of understanding about what constitutes decision quality in this context. A global increase in conditions associated with cognitive impairment such as dementia has led to an urgent need for more research into these conditions. The COVID-19 pandemic and subsequent necessity to conduct research with large numbers of critically ill patients has made this need even more pressing. Much of the empirical research centres on the desire to improve decision accuracy, despite growing evidence that authenticity is more reflective of the aim of proxy decisions and concerns about the methodological flaws in authenticity-focused studies. Such studies also fail to take account of the impact of decision-making on proxies, or the considerable body of research on improving the quality of healthcare decisions. This paper reports a concept synthesis of the literature that was conducted to develop the first conceptualisation of 'good' proxy decisions about research participation. Elements of decision quality were identified across three stages of decision-making: proxy preparedness for decision-making which includes knowledge and understanding, and values clarification and preference elicitation; the role of uncertainty, decisional conflict, satisfaction and regret in the decision-making process; and preference linked outcomes and their effect. This conceptualisation provides an essential first step towards the future development of interventions to enhance the quality of proxy decision-making and ensure proxy decisions represent patients' values and preferences.

A National Survey of Social Workers Focusing on Attitudes, Knowledge, and Practice Behaviors for Educating Patients About Advance Directives: Implication During COVID19.

Social workers have a critical role on medical teams for facilitating effective conversations about advance care planning (ACP) in palliative and end-of-life care. Engaging patients in such conversations may be influenced by clinicians' attitudes. During the COVID19 pandemic, the need to examine barriers to serious illness care across healthcare settings and areas of specialty practice became abundantly clear. This study examines: (1) social workers' attitudes about ACP and (2) factors that influence the completion of advance directives (ADs). Using a cross-sectional study design, we surveyed 142 social workers on their knowledge, attitudes, and behaviors related to ADs. Using exploratory factor analyses, we identified 2 provider practice attitudes factors, 3 perceived barriers factors, and 2 perceived importance of AD factors. We then used logistic regression to estimate odds ratios (ORs) and 95% confidence intervals (CIs) for each of the factors in association with the frequency social workers reported educating patients about ADs. While various positive and negative attitudes and barriers toward educating patients are important factors to consider, social workers' perceptions of the importance of engaging patients in ACP education was the most important factor that influenced their behaviors. The odds of always/often (vs. sometimes/rarely/never) educating patients about ADs in their practice were greater for those social workers who reported they see the importance of AD decision-making (OR = 3.21, 95%CI = 1.83-5.62) and confirming goals-of-care (OR = 1.76, 95%CI = 1.03-3.01). Social worker's ACP knowledge and skills for educating patients are important in initiating conversations prior to a health crisis, especially important for developing a comprehensive care plan.

End-of-Life Planning: Normalizing the Process.

End-of-life (EOL) planning occurs across the United States at a frequency of below 50%, suggesting a new approach to encourage action is in order, especially as COVID-19 and other potentially lethal conditions emerge. Utilizing data from a multi-year survey of 2,614 adults in Nebraska, this study examined demographic factors related to completion of EOL planning documents, and identified people with whom EOL wishes could, and had been discussed. Logistic regression estimates indicated more reliance on non-health care providers for EOL discussions. This shift with whom people would discuss EOL wishes may afford others an opportunity to encourage EOL discussions.

Withholding Medical Interventions and Ageism During a Pandemic: A Model for Resource Allocation Decision Making.

Decisions surrounding withholding and withdrawing medical interventions are common within the palliative and hospice care community. The unexpected effects of the recent pandemic ignited conversations about scarcity of resources and withholding medical interventions, based on age, among providers with limited expertise in palliative care. Using a case study and literature review, the aim of this article was to examine the best ethical considerations for resource allocation decision making that minimizes the effects of ageism. Public health ethics differs from clinical ethics by giving priority to promoting the greatest good over the protection of individual autonomy. This divide in ethics sheds light on the dangers associated with ageism. Age is often a component within clinical instruments that guide clinicians with allocation decisions. Basing decisions solely on age without evaluating health and functional status is dangerous and further propagates the discriminatory practices that fuel ageism. Previous research identified using ethical principles to guide resource allocation decisions but that may not be enough to protect the rights of older adults. A new model to guide these decisions should include advance directives and goals of care, medical indicators instead of demographics, functionality, transparent medical team, and impact of social determinants of health.

The Underappreciated Role of Advance Directives: How the Pandemic Revitalises Advance Care Planning Actions.

Covid-19 continues to alter our way of living and dying. Much attention has focused on how to resolve pressing issues surrounding resource allocation and competing public health ethics. While these are important discussions, the legal and ethical dilemmas of treatment decisions remain highly critical. The urgency to ensure that life and death affairs are in order is magnified due to the possibility of becoming infected with Covid-19. However, many people continue to face challenges in organising their future medical care and treatment. This article explores how the pandemic affects advance care planning through the lenses of law and ethics. The range of Covid-19 implications on advance care planning demonstrates a paradigm shift from a primarily elective function to an essential role in healthcare delivery. This renewed appreciation to advance care planning offers the opportunity to support and sustain the important role that it could play during ordinary and extraordinary times.

Palliative and end-of-life care in COVID-19 management in sub-Saharan Africa: a matter of concern.

The COVID-19 pandemic has strained health care systems beyond capacity resulting in many people not having access to life-sustaining measures even in well-resourced countries. Palliative and end-of-life care are therefore essential to alleviate suffering and ensure a continuum of care for patients unlikely to survive. This is challenging in sub-Saharan Africa where lack of trained teams on basic palliative care and reduced access to opioids limit implementation of palliative and end-of-life care. At the same time, health care providers have to cope with local cultural conceptions of death and absence of advance care directives.

Increasing Medical Power of Attorney Completion for Hospitalized Patients During the COVID Pandemic: A Social Work Led Quality Improvement Intervention.

BACKGROUND: The high risk of mechanical ventilation with COVID hospitalizations requires health-care systems to rapidly innovate advance care planning (ACP) delivery for hospitalized patients to promote goal-concordant care. MEASURES: Assess the impact of a social work and care management intervention on the proportion of admitted patients each week with a Medical Durable Power of Attorney (MDPOA). INTERVENTION: Social workers were consulted to assist with identification of a surrogate decision maker and completion of MDPOA forms for hospitalized patients. This intervention utilized change management strategies and was implemented between April and June 2020. OUTCOMES: From a baseline average of 30.1%, the weekly percentage of admitted patients with MDPOA forms rose to 42.8% with correlating evidence of nonrandom special cause variation. LESSONS LEARNED: Use of change management strategies resulted in rapid implementation of an effective ACP initiative. Ongoing needs include focusing on intervention sustainability and education of interprofessional providers about ACP processes.