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Background: Achieving universal health coverage (UHC) in the context of limited resources will require prioritising the most vulnerable and ensuring health policies and services are responsive to their needs. One way of addressing this is through the engagement of marginalised voices in the priority setting process. Public engagement approaches that enable group level deliberation as well as individual level preference capturing might be valuable in this regard, but there are limited examples of their practical application, and gaps in understanding their outcomes, especially with rural populations. Objective: To address this gap, we implemented a modified priority setting tool (Choosing All Together—CHAT) that enables individuals and groups to make trade‐offs to demonstrate the type of health services packages that may be acceptable to a rural population. The paper presents the findings from the individual choices as compared to the group choices, as well as the differences among the individual choices using this tool. Methods: Participants worked in groups and as individuals to allocate stickers representing the available budget to different health topics and interventions using the CHAT tool. The allocations were recorded at each stage of the study. We calculated the median and interquartile range across study participants for the topic totals. To examine differences in individual choices, we performed Wilcoxon rank sum tests. Results: The results show that individual interests were mostly aligned with societal ones, and there were no statistically significant differences between the individual and group choices. However, there were some statistically significant differences between individual priorities based on demographic characteristics like age. Discussion: The study demonstrates that giving individuals greater control and agency in designing health services packages can increase their participation in the priority setting process, align individual and community priorities, and potentially enhance the legitimacy and acceptability of priority setting. Methods that enable group level deliberation and individual level priority setting may be necessary to reconcile plurality. The paper also highlights the importance of capturing the details of public engagement processes and transparently reporting on these details to ensure valuable outcomes. Public Contribution: The facilitator of the CHAT groups was a member from the community and underwent training from the research team. The fieldworkers were also from the community and were trained and paid to capture the data. The participants were all members of the rural community‐ the study represents their priorities. [ABSTRACT FROM AUTHOR]

Focuses on advance directives and comments on studies which indicate that patients' wishes about life-sustaining treatments are not entirely stable over time. A study which reported that dialysis patients who had either written or verbal advance directives were much more likely than patients without directives to be reconciled to their death.

A response from the authors of the article "Effect of Palliative Care-Led Meetings for Families of Patients With Chronic Critical Illness: A Randomized Clinical Trial" in a previous 2016 issue is presented.

Background: "Choosing All Together" (CHAT), is a community engagement tool designed to give the public a voice in how best to allocate limited resources to improve population health. This process evaluation explored the mechanisms through which CHAT generates community engagement. Method: The CHAT tool was adapted and implemented for use in two rural communities (Nanoro, Burkina Faso, and Navrongo, Ghana) and one urban township (Soweto, South Africa) to prioritize maternal and child nutrition interventions. Community discussions were audio-recorded, transcribed, and translated into English. Twenty-two transcripts, including six each from Navrongo and Soweto and 10 from Nanoro, were analysed thematically to generate data driven codes and themes to explain mechanisms underlying the CHAT process. The process evaluation was based on the UK MRC process evaluation guidance. Results: Seven themes describing the functions and outcomes of CHAT were identified. Themes described participants deliberating trade-offs, working together, agreeing on priorities, having a shared vision, and increasing their knowledge, also the skills of the facilitator, and a process of power sharing between participants and researchers. Participants came to an agreement of priorities when they had a shared vision. Trained facilitators are important to facilitate meaningful discussion between participants and those with lower levels of literacy to participate fully. Conclusion: CHAT has been shown to be adaptable and useful in prioritising maternal and child nutrition interventions in communities in Burkina Faso, Ghana, and South Africa. Conducting CHAT in communities over a longer period and involving policy-makers would increase trust, mutual respect and develop partnerships. [ABSTRACT FROM AUTHOR]

The article discusses approaches for enrolling adults who cannot consent to more than minimal risk research in 2015. Topics covered include the acceptability of enrollment only when it is socially valuable, the question of acceptable levels of additional risks that may impair ordinary, daily lives, and the designation of individuals through power of attorney (DPA) to make research decisions for such adults. Also noted is the general acceptability of family surrogate consent on the matter.

The article focuses on a study conducted by researcher J.R. Johnson and colleagues related to spiritual care services for dying patients in intensive care units (ICUs) and their families. It states that the services helped in family's satisfaction and decision making in ICU. It mentions that families which received the services were more religiously inclined than those who did not avail the services.

The authors focus on the electronic health records' (EHR) use in the U.S. that lead to increased communication between a physician and a patient. They argue that invitation by doctors to patients to view their electronic chart acts in activation of patients. They suggest that patients-centered care and gazing EHR screen by both patients and physicians can enhance their relationship. They mention that patient activation has lead to improved management of chronic disease and mental illness.

The article presents a study conducted by Young et al. that recommends a departure from current practice in intensive care units in suggesting that rationing be systematically disclosed. The researchers argue that if patients and families are routinely notified that rationing is done to effectively meet the needs of all patients, such notification would help to set realistic expectations and prepare patients and families for disclosure in specific instances.

Policy PointsEngaging and involving underrepresented communities when setting research priorities could make the scientific research agenda more equitable, more just, and more responsive to their needs and values.Groups and individuals from minority and underserved communities strongly prioritized child health and mental health research, often choosing to invest at the highest possible level.Groups consisting of predominantly Native American or Arab American participants invested in culture and beliefs research at the highest level, while many groups did not select it at all. The priority given to culture and beliefs research by these groups illustrates the importance of paying special attention to unique preferences, and not just commonly held views, when getting public input on spending priorities for research. Context: A major contributor to health disparities is the relative lack of resources—including resources for science—allocated to address the health problems of those with disproportionately greater needs. Engaging and involving underrepresented communities in setting research priorities could make the scientific research agenda more equitable, more just, and more responsive to their needs and values. We engaged minority and underserved communities in informed deliberations and report here their priorities for health research. Methods: Academic‐community partnerships adapted the simulation exercise CHAT for setting health research priorities. We had participants from minority and medically underserved communities (47 groups, n = 519) throughout Michigan deliberate about health research priorities, and we used surveys and CHAT software to collect the demographic characteristics and priorities selected by individuals and groups. Findings: The participants ranged in age (18 to 88), included more women than men, and were overrepresented by minority groups. Nearly all the deliberating groups selected child health and mental health research (93.6% and 95.7%), and most invested at the highest level. Aging, access, promote health, healthy environment, and what causes disease were also prioritized by groups. Research on mental health and child health were high priorities for individuals both before and after group deliberations. Access was the only category more likely to be selected by individuals after group deliberation (77.0 vs 84.0%, OR = 1.63, p =.005), while improve research, health policy, and culture and beliefs were less likely to be selected after group deliberations (all, p <.001). However, the level of investment in many categories changed after the group deliberations. Participants identifying as Black/African American were less likely to prioritize mental health research, and those of Other race were more likely to prioritize culture and beliefs research. Conclusions: Minority and medically underserved communities overwhelmingly prioritized mental health and child health research in informed deliberations about spending priorities. [ABSTRACT FROM AUTHOR]

The authors respond to commentaries on the article "Bioethicists Can and Should Contribute to Addressing Racism." Issues and concerns addressed are the role of bioethicists in addressing racial bias beyond the home, training and skills of bioethicists to address racial violence and racism, advocacy or activist role of bioethicists, intersectional approach to addressing racial injustice, and the significance of power imbalances and structural aspects of racism that bioethicists must address.

The article presents the author's perspectives on the obligation of a physician to offer medical treatment to terrorists. The author contends that all obligations are immediately derived from rights along with usual views on the role morality of physicians. The author states that the responsibility to treat enemies is a requirement, which gives the only possible basis for internationally known protection for physicians who work in war zones.

The article responds to peer commentary on the article "Does Ethics Education Influence the Moral Action of Practicing Nurses and Social Workers," by C. Grady and colleagues. It mentions that some responses noted controversies regarding ethics education. It emphasizes that continued development and testing of theoretical models as well as increased attention to describing and evaluating existing ethics education programs could lead to identification of best practices.

The article expresses the author's view on how primary care medicine and intersectoral health can help solve the link between health and poverty. The author states that poverty makes people more prone to disease especially in developing countries and that even the most sophisticated health care delivery systems cannot face the diseases of poverty in isolation. He believes that an effective primary care can reduce avoidable ill health and mortality among poor adults.

Home care is one of the fastest‐growing industries in the United States, providing valuable opportunities for millions of older adults and people with disabilities to live at home rather than in institutional settings. Home care workers assist clients with essential activities of daily living, but their wages and working conditions generally fail to reflect the importance of their work. Drawing on the work of Eva Feder Kittay and other care ethicists, we argue that good care involves attending to the needs of another out of a concern for their well‐being. Such care should be standard in the home care system. Yet, because of the pervasive racial, gender, and economic inequalities that the home care industry perpetuates, home care workers and their clients cannot reasonably be expected to care about each other. We endorse reforms aimed at enabling home care workers and their clients to form and maintain professional relationships that cultivate care.. [ABSTRACT FROM AUTHOR]

Responds to several editorial comments made on the authors' study of patients' and families' preferences for medical intensive care.

A correction to the article "Exploring Public Attitudes Towards Approaches to Discussing Costs in the Clinical Encounter" that was published in the 2013 issue is presented.

Background: Concerns about unsustainable costs in the US Medicare program loom as the number of retirees increase and experiences serious and costly illnesses like cancer. Engagement of stakeholders, particularly cancer patients and their families, in prioritizing insured services offers a valuable strategy for informing Medicare coverage policy. We designed and evaluated a decision exercise that allowed cancer patients and family members to choose Medicare benefits for advanced cancer patients.Methods: The decision tool, Choosing Health plans All Together (CHAT) was modified to select services for advanced cancer patients. Patients with a cancer history (N = 246) and their family members (N = 194) from North Carolina participated in 70 CHAT sessions. Variables including participants' socio-demographic characteristics, health status, assessments of the exercise and results of group benefit selections were collected. Routine descriptive statistics summarized participant characteristics and Fisher's exact test compared group differences. Qualitative analysis of group discussions were used to ascertain reasons for or against selecting benefits.Results: Patients and family members (N = 440) participated in 70 CHAT exercises. Many groups opted for such services as palliative care, nursing facilities, and services not currently covered by the Medicare program. In choosing among four levels of cancer treatment coverage, no groups chose basic coverage, 27 groups (39%) selected intermediate coverage, 39 groups (56%) selected high coverage, and 4 groups (6%) chose the most comprehensive cancer coverage. Reasons for or against benefit selection included fairness, necessity, need for prioritizing, personal experience, attention to family needs, holistic health outlook, preference for comfort, freedom of choice, and beliefs about the proper role of government. Participants found the exercise very easy (59%) or fairly easy (39%) to understand and very informative (66%) or fairly informative (31%). The majority agreed that the CHAT exercise led to fair decisions about priorities for coverage by which they could abide.Conclusions: It is possible to involve cancer patients and families in explicit discussions of their priorities for affordable advanced cancer care through the use of decision tools designed for this purpose. A key question is whether such a conversation is possible on a broader, national level. [ABSTRACT FROM AUTHOR]

A response from the authors of an article on the use of electronic health record (EHR) to enhance patient-physician interactions in a previous issue is presented.

A response from the authors of the article "Enhancing patient-centered communication and collaboration by using the electronic health record in the examination room," is presented.

The article presents an interview with Marion Danis, head of the Section of Ethics and Health Policy in the Department of Clinical Bioethics in the clinical center of the National Institutes of Health (NIH). She talks about her work as a physician and at the same time, an ethicist. She discusses her reasons for working at the NIH to do ethics and some of the recent developments in bioethics.

Most theories of parenthood assume, at least implicitly, that a child will grow up to be an independent, autonomous adult. However, some children with cognitive limitations or psychiatric illness are unable to do so. For this reason, these accounts do not accommodate the circumstances and responsibilities of parents of such adult children. Our article attempts to correct this deficiency. In particular, we describe some of the common characteristics and experiences of this population of parents and children, examine the unique aspects of their relationships, review several philosophical accounts of parental obligations, consider how these accounts might be extrapolated to semiautonomous adult children, and provide suggestions about parental obligations to promote autonomy and independence in adult children with cognitive limitations or psychiatric illness. In extending accounts of parental responsibilities to the case of semiautonomous adults, we find that the parental role includes the duty to continue to provide care—indefinitely if necessary—while cultivating autonomy and independence. [ABSTRACT FROM PUBLISHER]

Background: Resource scarcity in health care is a universal challenge. In high-income settings, bedside rationing is commonly discussed and debated as a means to addressing scarcity. However, little is known about physicians' experiences in resource-limited contexts in low- income countries. Here we describe physicians' experiences regarding scarcity of resources, bedside rationing, use of various strategies to save resources, and perceptions of the consequences of rationing in Ethiopia.Methods: A national survey was conducted amongst physicians from 49 public hospitals using stratified, multi-stage sampling in six regions. All physicians in the selected hospitals were invited to respond to a self-administered questionnaire. Data were weighted and analyzed using descriptive statistics.Results: In total, 587 physicians responded (91% response rate). The majority had experienced system-wide shortages of various types of medical services. The services most frequently reported to be in short supply, either daily or weekly, were access to surgery, specialist and intensive care units, drug prescriptions and admission to hospital (52, 49, 46, 47 and 46% respectively). The most common rationing strategies used daily or weekly were limiting laboratory tests, hospital drugs, radiological investigations and providing second best treatment (47, 47, 47 and 39% respectively). Availability of institutional or national guidelines for whom to see and treat first was lacking. Almost all respondents had witnessed different adverse consequences of resource scarcity; 54% reported seeing patients who, in their estimation, had died due to resource scarcity. Almost 9 out of 10 physicians were so troubled by limited resources that they often regretted their choice of profession.Conclusion: This study provides the first glimpses of the untold story of resource shortage and bedside rationing in Ethiopia. Physicians encounter numerous dilemmas due to resource scarcity, and they report they lack adequate guidance for how to handle them. The consequences for patients and the professionals are substantial. [ABSTRACT FROM AUTHOR]

The recent Ebola outbreak in West Africa began in the spring of 2014 and has since caused the deaths of over 6,000 people. Since there are no approved treatments or prevention modalities specifically targeted at Ebola Virus Disease (EVD), debate has focused on whether unproven interventions should be offered to Ebola patients outside of clinical trials. Those engaged in the debate have responded rapidly to a complex and evolving crisis, however, and this debate has not provided much opportunity for in-depth analysis. Additionally, the existing literature on access to unproven therapies has focused on contexts like HIV/AIDS and oncology, which are very different than the Ebola epidemic. In this paper, we examine the ethical issues surrounding access to unproven therapies in the context of the recent Ebola outbreak to yield new insights about this controversial and unsettled issue. We argue first that, in this context, the interests of patients in obtaining access to unproven therapies are not fully aligned with the interests of their providers and drug developers. Second, we focus on the resource constraints facing providers, funders, and patients and conclude that they often counsel against the use of unproven interventions against EVD. [ABSTRACT FROM AUTHOR]

The authors reflect on the use of electronic health records (EHR) at oncology clinics with regards to how physicians can improve communication with patients using EHR. They discuss how EHR can improve patient care despite the belief that it is a barrier to interpersonal aspects of medical care. They also detail the factors needed for EHR to succeed in oncology clinics which include maintaining nonverbal contact with patients.

Occasionally, the ability of prospective research participants to consent may be uncertain. Yet standardized capacity‐assessment tools may not suffice to determine the ability to consent to a particular research protocol. This study consisted of a retrospective review of the outcomes of an alternative approach used by the Ability to Consent Assessment Team at the National Institutes of Health. Of 944 individuals evaluated over 20 years (1999‐2019), 70.1% were determined to have capacity to consent to participate in research. Of those who lacked capacity to consent and were subsequently evaluated for their ability to assign a surrogate, 86.0% had the ability to do so. The findings demonstrate that establishing a task‐specific approach for assessing the capacity of potential participants to consent to a variety of research protocols can facilitate safe and ethically justifiable inclusion of individuals whose ability to consent is initially uncertain. [ABSTRACT FROM AUTHOR]

Insurance coverage for mental health services has historically lagged behind other types of health services. We used a simulation exercise in which groups of laypersons deliberate about healthcare tradeoffs. Groups deciding for their 'community' were more likely to select mental health coverage than individuals. Individual prioritization of mental health coverage, however, increased after group discussion. Participants discussed: value, cost and perceived need for mental health coverage, moral hazard and community benefit. A deliberative exercise in priority-setting led a significant proportion of persons to reconsider decisions about coverage for mental health services. Deliberations illustrated public-spiritedness, stigma and significant polarity of views. [ABSTRACT FROM AUTHOR]

The article discusses the development and verification of a printed information brochure for families of chronically critically ill patients through cognitive testing via interviews. A printed information brochure that may enhance family understanding of chronic critical illnesses and its outcomes was developed and validated. The described structed process can function as a template for developing other information aids for use with seriously ill populations.

Abstract: Health disparities are, to a large extent, the result of socio-economic factors that cannot be entirely mitigated through the health care system. While an array of social services are thought to be necessary to address the social determinants of health, budget constraints, particularly in difficult economic times, limit the availability of such services. It is therefore necessary to prioritize interventions through some fair process. While it might be appropriate to engage in public deliberation to set priorities, doing so requires that the public accept such a deliberative process and appreciate the social determinants of health. We therefore analyzed the results of a study in which groups deliberated to prioritize socio-economic interventions to examine whether these two requirements can possibly be met and to explore the basis for their priorities. A total of 431 residents of Washington, D.C. with incomes under 200% of the federal poverty threshold participated in 43 groups to engage in a hypothetical exercise to prioritize interventions designed to ameliorate the social determinants of health within the constraints of a limited budget. Findings from pre- and post-exercise questionnaires demonstrate that the priority setting exercise was perceived as a fair deliberative process, and that following the deliberation, participants became more likely to agree that a broad number of determinants contribute to their health. Qualitative analysis of the group discussions indicate that participants prioritized interventions that would provide for basic necessities and improve community conditions, while at the same time addressing more macro-structural factors such as homelessness and unemployment. We conclude that engaging small groups in deliberation about ways to address the social determinants of health can both change participant attitudes and yield informed priorities that might guide public policy aimed at most affordably reducing health disparities. [Copyright &y& Elsevier]

Socioeconomic factors stand in the way of good health for low-income populations. We suggest that employee benefits might serve as a means of improving the health of low-wage earners. We convened groups of low-income earners to design hypothetical employee benefit packages. Qualitative analysis of group discussions regarding state-mandated benefits indicated that participants were interested in a great variety of benefits, beyond health care, that address socioeconomic determinants of health. Long-term financial and educational investments were of particular value. These results may facilitate the design of employee benefits that promote the health of low-income workers. [ABSTRACT FROM AUTHOR]

Many initiatives for covering the uninsured call for ‘basic’ health care coverage, yet few define that term. The Just Coverage project used a computer-based simulation exercise to learn how nearly 800 community members in northern California identified the inclusions and exclusions that would constitute basic coverage, Working with a limited budget, participants distinguished essential from nonessential health care needs, resisted high patient cost sharing, and tolerated tight restrictions on provider choice. They also supported practice guidelines and standards of effectiveness, and they excluded nigh-cost, low-value interventions. These results reinforce the importance of community input to policymakers. [ABSTRACT FROM AUTHOR]

This article provides pragmatic advice for organizations interested in creating a research ethics consultation service (RECS). A robust RECS has the potential to build capacity among investigators to identify and consider the ethical issues they encounter while conducting their research. Determining whether to establish an RECS should begin with an institutional‐needs assessment that includes three key questions: What are the current resources available to research teams to navigate ethical concerns that arise from their research? Is there a demand or perceived need for more resources? Is there institutional support (financial and otherwise) to establish and maintain an RECS? If this results in the decision to establish the consultation service, relevant institutional stakeholders must be identified and consulted, and personnel with the requisite skills recruited. The next step is to establish an RECS and build the infrastructure to process and respond to requests. The RECS's long‐term sustainability will depend on a stable source of funding and a mechanism to receive constructive feedback to ensure that the service is meeting the institutional needs it set out to address. [ABSTRACT FROM AUTHOR]

It is widely agreed that an effective response to the coronavirus disease 2019 pandemic needs to include a vaccine that is safe and effective for minors. However, many current vaccine trials have no plans for when to enroll minors. Others have recently proposed enrolling minors as young as 12 years old. This lack of a systematic approach raises 2 concerns. Waiting too long to enroll minors could unjustly deny minors and their families the benefits of a vaccine and has the potential to delay an effective response to the pandemic by a year or longer. At the same time, enrolling minors too soon runs the risk of exposing them to excessive risks. With these concerns in mind, in the present article, we propose recommendations for when and how to enroll minors in vaccine trials for the coronavirus disease 2019. [ABSTRACT FROM AUTHOR]

The article presents the authors' insights on the optimization of the involvement of language interpreters in time of the clinical encounter. The authors focus on the possible harms of interpreter over-reliance. They aim to stimulate research that explores the benefits of interpreter involvement and provide guidance for clinicians on approaches to conversation with English proficiency (LEP).

The article offers information on the gadolinium deposition in the brain. Topics discussed include evidence of gadolinium deposition in the brain does not trigger immediate clinical action; mentions that of gadolinium deposition in the brain may be distressing to some participants; and also mentions there are clear parallels between secondary findings in genetic testing and potential findings in gadolinium study.

• Quickly finding a safe and effective vaccine against SARS Co-V-2 would be of great value. • Collecting rigorous safety and efficacy data without compromising ethical and scientific norms is critical. • The best approach is accelerated individually randomized controlled trials. • Premature distribution could hamper public health and finding safe, effective SARS CoV-2 vaccines. A sense of urgency exists to develop vaccines against SARS CoV-2, responsible for numerous global cases and deaths, as well as widespread social and economic disruption. Multiple approaches have been proposed to speed up vaccine development, including accelerated randomized controlled trials (RCT), controlled human challenge trials (CHI), and wide distribution through an emergency use authorization after collecting initial data. There is a need to examine how best to accelerate vaccine development in the setting of a pandemic, without compromising ethical and scientific norms. Trade-offs in scientific and social value between generating reliable evidence about safety and efficacy while promoting rapid vaccine availability are examined along five ethically relevant dimensions: (1) confidence in and generalizability of data, (2) feasibility, (3) speed and cost, (4) participant risks, and (5) social risks. Accelerated individually randomized RCTs permit expeditious evaluation of vaccine candidates using established methods, expertise, and infrastructure. RCTs are more likely than other approaches to be feasible, increase speed and reduce cost, and generate reliable data about safety and efficacy without significantly increasing risks to participants or undermining societal trust. Ethical analysis suggests that accelerated RCTs are the best approach to accelerating vaccine development in a pandemic, and more likely than other approaches to enhance social value without compromising ethics or science. RCTs can expeditiously collect rigorous data about vaccine safety and efficacy. Innovative and flexible designs and implementation strategies to respond to shifting incidence and test vaccine candidates in parallel or sequentially would add value, as will coordinated data sharing across vaccine trials. CHI studies may be an important complementary strategy when more is known. Widely disseminating a vaccine candidate without efficacy data will not serve the public health nor achieve the goal of identifying safe and effective SARS Co-V-2 vaccines. [ABSTRACT FROM AUTHOR]

Background: Physicians play a key role in mitigating and managing costs in healthcare which are rising. Objective: Conduct a cross-sectional survey in 2017, comparing results to a 2012 survey to understand US physicians' evolving attitudes and strategies concerning healthcare costs. Participants: Random sample of 1200 US physicians from the AMA Masterfile. Measures: Physician views on responsibility for costs of care, enthusiasm for cost-saving strategies, cost-consciousness scale, and practice strategies on addressing cost. Key Results: Among 1200 physicians surveyed in 2017, 489 responded (41%). In 2017, slightly more physicians reported that physicians have a major responsibility for addressing healthcare costs (32% vs. 27%, p = 0.03). In 2017, more physicians attributed "major responsibility" for addressing healthcare costs to pharmaceutical companies (68% vs. 56%, p < 0.001) and hospital and health systems (63% vs. 56%%, p = 0.008) in contrast to 2012. Fewer respondents in 2017 attributed major responsibility for addressing costs to trial lawyers (53% vs. 59%, p = 0.007) and patients (42% vs. 52%, p < 0.0001) as compared to 2012. Physician enthusiasm for patient-focused cost-containment strategies like high deductible health plans and higher co-pays (62% vs. 42%, p < 0.0001 and 62% vs. 39%, p < 0.0001, not enthusiastic, respectively) declined. Physicians reported that when they discussed cost, it resulted in a change in disease management 56% of the time. Cost-consciousness within surveyed physicians had not changed meaningfully in 2017 since 2012 (31.7 vs. 31.2). Most physicians continued to agree that decision support tools showing costs would be helpful in their practice (> 70%). After adjusting for specialty, political affiliation, practice setting, age, and gender, only democratic/independent affiliation remained a significant predictor of cost-consciousness. Conclusions and Relevance: US physicians increasingly attribute responsibility for rising healthcare costs to organizations and express less enthusiasm for strategies that increase patient out-of-pocket cost. Interventions that focus on physician knowledge and communication strategies regarding cost of care may be helpful. [ABSTRACT FROM AUTHOR]

Ethically challenging situations routinely arise in the course of illness and healthcare. However, very few studies have surveyed patients and family members about their experiences with ethically challenging situations. To address this gap in the literature, we surveyed patients and family members at three hospitals. We conducted a content analysis of their responses to open-ended questions about their most memorable experience with an ethical concern for them or their family member. Participants (N = 196) described 219 unique ethical experiences that spanned many of the prevailing themes of bioethics, including the patient-physician relationship, end-of-life care, decision-making capacity, healthcare costs, and genetic testing. Participants focused on relational issues in the course of experiencing illness and receiving medical care and concerns regarding the patient-physician encounters. Many concerns arose outside of a healthcare setting. These data indicate areas for improvement for healthcare providers but some concerns may be better addressed outside of the traditional healthcare setting. [ABSTRACT FROM AUTHOR]

Context: Medicaid plays a critical role in low-income, minority, and medically underserved communities, particularly in states that have expanded Medicaid under the Affordable Care Act. Yet, the voices of underresourced communities are often unheard in decisions about how to allocate Medicaid's scarce resources, and traditional methods of public engagement are poorly suited to gathering such input. We argue that deliberative public engagement can be a useful tool for involving communities in setting Medicaid priorities. Method: We engaged 209 residents of low-income, medically underserved Michigan communities in discussions about Medicaid spending priorities using an exercise in informed deliberation: CHAT (CHoosing All Together). Participants learned about Medicaid, deliberated in small groups, and set priorities both individually and collectively. Findings: Participants prioritized broad eligibility consistent with the ACA expansion, accepted some cost sharing, and prioritized spending in areas--including mental health--that are historically underfunded. Participants allocated less funding beyond benefit coverage, such as spending on healthy communities. Participants perceived the deliberative process as fair and informative, and they supported using it in the policy-making process. Conclusion: The choices of participants from low-income, medically underserved communities reflect a unique set of priorities and suggest that engaging low-income communities more deeply in Medicaid policy making might result in different prioritization decisions. [ABSTRACT FROM AUTHOR]

Physicians play a key role in implementing health policy, and US physicians were split in their opinions about the Affordable Care Act (ACA) soon after its implementation began. We readministered elements of a prior survey of US physicians to a similar sample to understand how US physicians' opinions of the ACA may have changed over a crucial five-year implementation period (2012-17), and we compared responses across both surveys. Of the 1,200 physicians to whom we sent a survey in the summer of 2017, 489 responded (a response rate of 41 percent). A majority of respondents (60 percent) believed that the ACA had improved access to care and insurance, yet many (43 percent) felt that it had reduced the affordability of coverage. More physicians agreed in 2017 than in 2012 that the ACA "would turn United States health care in the right direction" (53 percent versus 42 percent), despite reporting perceived worsening in several practice conditions over the same time period. After we adjusted for specialty, political party affiliation, practice setting type, perceived social responsibility, age, and sex, we found that only political party affiliation was a significant predictor of support for the ACA in the 2017 results. [ABSTRACT FROM AUTHOR]

Background: The field of clinical ethics is examining ways of determining competency. The Assessing Clinical Ethics Skills (ACES) tool offers a new approach that identifies a range of skills necessary in the conduct of clinical ethics consultation and provides a consistent framework for evaluating these skills. Through a training website, users learn to apply the ACES tool to clinical ethics consultants (CECs) in simulated ethics consultation videos. The aim is to recognize competent and incompetent clinical ethics consultation skills by watching and evaluating a videotaped CEC performance. We report how we set a criterion cut score (i.e., minimally acceptable score) for judging the ability of users of the ACES tool to evaluate simulated CEC performances. Methods: A modified Angoff standard-setting procedure was used to establish the cut score for an end-of-life case included on the ACES training website. The standard-setting committee viewed the Futility Case and estimated the probability that a minimally competent CEC would correctly answer each item on the ACES tool. The committee further adjusted these estimates by reviewing data from 31 pilot users of the Futility Case before determining the cut score. Results: Averaging over all 31 items, the proposed proportion correct score for minimal competency was 80%, corresponding to a cut score that is between 24 and 25 points out of 31 possible points. The standard-setting committee subsequently set the minimal competency cut score to 24 points. Conclusions: The cut score for the ACES tool identifies the number of correct responses a user of the ACES tool training website must attain to "pass" and reach minimal competency in recognizing competent and incompetent skills of the CECs in the simulated ethics consultation videos. The application of the cut score to live training of CECs and other areas of practice requires further investigation. [ABSTRACT FROM AUTHOR]

Purpose: To identify specific components of ICU clinician supportive care and communication that are associated with increased post-traumatic stress disorder (PTSD) symptoms for surrogate decision makers of patients with chronic critical illness (CCI).Methods: We conducted a secondary analysis of data from a randomized controlled trial of palliative care-led meetings to provide information and support for CCI surrogates. The primary outcome for this secondary analysis was PTSD symptoms at 90 days, measured by the Impact of Event Scale-Revised (IES-R). Caregiver perceptions of clinician support and communication were assessed using a version of the After-Death Bereaved Family Member Interview (ADBFMI) instrument modified for use in non-bereaved in addition to bereaved caregivers. The association between ADBFMI items and IES-R score was analyzed using multiple linear regression.Results: Ninety-day follow up was complete for 306 surrogates corresponding to 224 patients. Seventy-one percent of surrogates were female, and the mean age was 51 years. Of the domains, negative perception of the patient's physical comfort and emotional support was associated with the greatest increase in surrogate PTSD symptoms (beta coefficient 1.74, 95% CI 0.82-2.65). The three specific preselected items associated with increased surrogate PTSD symptoms were surrogate perception that clinicians did not listen to concerns (beta coefficient 10.7, 95% CI 3.6-17.9), failure of the physician to explain how the patient's pain would be treated (beta coefficient 12.1, 95% CI 4.9-19.3), and lack of sufficient religious contact (beta coefficient 11.7, 95% CI 2-21.3).Conclusion: Modifiable deficits in ICU clinician support and communication were associated with increased PTSD symptoms among CCI surrogates. [ABSTRACT FROM AUTHOR]

The article offers information on the significant contributions of intersectionality in clinical medicine. It mentions intersectionality requires broader commitment to institutional change, which can be difficult to bring about, given the intransigence of institutional policies and practices; and also mentions intersectionality is concerned with macro-, meso-, and micro-level interactions.

Background: Out-of-pocket health expenditures can pose major financial risks, create access-barriers and drive patients and families into poverty. Little is known about physicians’ role in financial protection of patients and families at the bedside in low-income settings and how they perceive their roles and duties when treating patients in a health care system requiring high out-of-pocket costs. Objective: Assess physicians’ concerns regarding financial welfare of patients and their families and analyze physicians’ experiences in reducing catastrophic health expenditures for patients in Ethiopia. Method: A national survey was conducted among physicians at 49 public hospitals in six regions in Ethiopia. Descriptive statistics were used. Results: Totally 587 physicians responded (response rate 91%) and 565 filled the inclusion criteria. Health care costs driving people into financial crisis and poverty were witnessed by 82% of respondants, and 88% reported that costs for the patient are important when deciding to use or not use an intervention. Several strategies to save costs for patients were used: 37–79% of physicians were doing this daily or weekly through limiting prescription of drugs, limiting radiologic studies, ultrasound and lab tests, providing second best treatments, and avoiding admission or initiating early discharge. Overall, 75% of the physicians reported that ongoing and future costs to patients influenced their decisions to a greater extent than concerns for preserving hospital resources. Conclusion: In Ethiopia, a low-income country aiming to move towards universal health coverage, physicians view themselves as both stewards of public resources, patient advocates and financial protectors of patients and their families. Their high concern for family welfare should be acknowledged and the economic and ethical implications of this practice must be further explored. [ABSTRACT FROM AUTHOR]

Intersectionality has become a significant intellectual approach for those thinking about the ways that race, gender, and other social identities converge in order to create unique forms of oppression. Although the initial work on intersectionality addressed the unique position of black women relative to both black men and white women, the concept has since been expanded to address a range of social identities. Here we consider how to apply some of the theoretical tools provided by intersectionality to the clinical context. We begin with a brief discussion of intersectionality and how it might be useful in a clinical context. We then discuss two clinical scenarios that highlight how we think considering intersectionality could lead to more successful patient-clinician interactions. Finally, we extrapolate general strategies for applying intersectionality to the clinical context before considering objections and replies. [ABSTRACT FROM AUTHOR]

Objectives: Family members commonly make medical decision for patients with chronic critical illness. This study examines how family members approach this decision-making role in real time.Design: Qualitative analysis of interviews with family members in the intervention arm of a randomized controlled communication trial.Settings: Medical ICUs at four U.S. hospitals.Participants: Family members of patients with chronic critical illness (adults mechanically ventilated for ≥ 7 d and expected to remain ventilated and survive for ≥ 72 hr) who participated in the active arm of a communication intervention study.Interventions: Family members participated in at least two content-guided, informational, and emotional support meetings led by a palliative care physician and nurse practitioner.Measurements and Main Results: Grounded theory was used for qualitative analysis of 66 audio recordings of meetings with 51 family members. Family members perceived their role in four main ways: voice of the patient, advocate for the patient, advocate for others, and advocate for oneself. Their decision-making was characterized by balancing goals, sharing their role, keeping perspective, remembering previous experiences, finding sources of strength, and coping with various burdens.Conclusions: Family members take a multifaceted approach as they participate in decision-making. Understanding how surrogates perceive and act in their roles may facilitate shared decision-making among clinicians and families during critical care. [ABSTRACT FROM AUTHOR]