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Patients and family members (N = 671) were surveyed in five Mid-Atlantic U.S. hospitals to ascertain the number and kinds of ethical concerns they are presently experiencing or have previously experienced while being sick or receiving medical care. Seventy percent of participants had at least one (range 0–14) type of ethical concern or question. The most commonly experienced concerns pertained to being unsure how to plan ahead or complete an advance directive (29.4%), being unsure whether someone in the family was able to make their own decisions (29.2%), deciding about limiting life-sustaining treatments (28.6%), wondering about disclosing personal medical information to others in the family (26.4%) and not being sure whether to undergo treatment because of cost (26.2%). Most were interested to some degree in getting help from ethics consultants in the future (76.6%). Given this prevalence, common concerns might usefully be addressed systematically, rather than exclusively on a case-by-case basis. [ABSTRACT FROM AUTHOR]

Context: Engaging underrepresented communities in health research priority setting could make the scientific agenda more equitable and more responsive to their needs. Objective: Evaluate democratic deliberations engaging minority and underserved communities in setting health research priorities. Methods: Participants from underrepresented communities throughout Michigan (47 groups, n = 519) engaged in structured deliberations about health research priorities in professionally facilitated groups. We evaluated some aspects of the structure, process, and outcomes of deliberations, including representation, equality of participation, participants' views of deliberations, and the impact of group deliberations on individual participants' knowledge, attitudes, and points of view. Follow‐up interviews elicited richer descriptions of these and also explored later effects on deliberators. Results: Deliberators (age 18‐88 years) overrepresented minority groups. Participation in discussions was well distributed. Deliberators improved their knowledge about disparities, but not about health research. Participants, on average, supported using their group's decision to inform decision makers and would trust a process like this to inform funding decisions. Views of deliberations were the strongest predictor of these outcomes. Follow‐up interviews revealed deliberators were particularly struck by their experience hearing and understanding other points of view, sometimes surprised at the group's ability to reach agreement, and occasionally activated to volunteer or advocate. Conclusions: Deliberations using a structured group exercise to engage minority and underserved community members in setting health research priorities met some important criteria for a fair, credible process that could inform policy. Deliberations appeared to change some opinions, improved some knowledge, and were judged by participants worth using to inform policymakers. [ABSTRACT FROM AUTHOR]

The author discusses the need for healthcare ethics consultants to initially check internal behaviors and practices that have racist consequences to put anti-racism into action. Topics covered include the possible education of healthcare organizations and practitioners on racism in healthcare delivery and its lead into unfair health outcomes, and the review of policies that may reflect structural injustice. Also noted is the consideration of allied actions to form solutions to racism.

This article examines how nations split decision-making about health services between federal and sub-federal levels, creating variation between states or provinces. When is this variation ethically acceptable? We identify three sources of ethical acceptability—procedural fairness, value pluralism, and substantive fairness—and examine these sources with respect to a case study: the fact that only 30 out of 51 US states or territories passed mandates requiring private insurers to offer extensive coverage of autism behavioral therapies, creating variation for privately insured children living in different US states. Is this variation ethically acceptable? To address this question, we need to analyze whether mandates go to more or less needy states and whether the mandates reflect value pluralism between states regarding government’s role in health care. Using time-series logistic regressions and data from National Survey of Children with Special Health Care Needs, Individual with Disabilities Education Act, legislature political composition, and American Board of Pediatrics workforce data, we find that the states in which mandates are passed are less needy than states in which mandates have not been passed, what we call a cumulative advantage outcome that increases between-state disparities rather than a compensatory outcome that decreases between-state disparities. Concluding, we discuss the implications of our analysis for broader discussions of variation in health services provision. [ABSTRACT FROM PUBLISHER]

BACKGROUND: Patients' willingness to discuss costs of treatment alternatives with their physicians is uncertain. OBJECTIVE: To explore public attitudes toward doctor-patient discussions of insurer and out-of-pocket costs and to examine whether several possible communication strategies might enhance patient receptivity to discussing costs with their physicians. DESIGN: Focus group discussions and pre-discussion and post-discussion questionnaires. PARTICIPANTS: Two hundred and eleven insured individuals with mean age of 48 years, 51 % female, 34 % African American, 27 % Latino, and 50 % with incomes below 300 % of the federal poverty threshold, participated in 22 focus groups in Santa Monica, CA and in the Washington, DC metro area. MAIN MEASUREMENTS: Attitudes toward discussing out-of-pocket and insurer costs with physicians, and towards physicians' role in controlling costs; receptivity toward recommended communication strategies regarding costs. KEY RESULTS: Participants expressed more willingness to talk to doctors about personal costs than insurer costs. Older participants and sicker participants were more willing to talk to the doctor about all costs than younger and healthier participants ( OR = 1.8, p = 0.004; OR = 1.6, p = 0.027 respectively). Participants who face cost-related barriers to accessing health care were in greater agreement than others that doctors should play a role in reducing out-of-pocket costs ( OR = 2.4, p = 0.011). Participants did not endorse recommended communication strategies for discussing costs in the clinical encounter. In contrast, participants stated that trust in one's physician would enhance their willingness to discuss costs. Perceived impediments to discussing costs included rushed, impersonal visits, and clinicians who are insufficiently informed about costs. CONCLUSIONS: This study suggests that trusting relationships may be more conducive than any particular discussion strategy to facilitating doctor-patient discussions of health care costs. Better public understanding of how medical decisions affect insurer costs and how such costs ultimately affect patients personally will be necessary if discussions about insurer costs are to occur in the clinical encounter. [ABSTRACT FROM AUTHOR]

Objective To demonstrate that employees can gain understanding of the financial constraints involved in designing health insurance benefits. Background While employees who receive their health insurance through the workplace have much at stake as the cost of health insurance rises, they are not necessarily prepared to constructively participate in prioritizing their health insurance benefits in order to limit cost. Design Structured group exercises. Setting and participants Employees of 41 public and private organizations in Northern California. Intervention Administration of the CHAT (Choosing Healthplans All Together) exercise in which participants engage in deliberation to design health insurance benefits under financial constraints. Main outcome measures Change in priorities and attitudes about the need to exercise insurance cost constraints. Results Participants ( N = 744) became significantly more cognizant of the need to limit insurance benefits for the sake of affordability and capable of prioritizing benefit options. Those agreeing that it is reasonable to limit health insurance coverage given the cost increased from 47% to 72%. Conclusion It is both possible and valuable to involve employees in priority setting regarding health insurance benefits through the use of structured decision tools. [ABSTRACT FROM AUTHOR]

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]

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]

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]

Objective: To learn how minority and underserved communities would set priorities for patient-centered outcomes research (PCOR).Data Sources: Sixteen groups (n = 183) from minority and underserved communities in two states deliberated about PCOR priorities using the simulation exercise CHoosing All Together (CHAT). Most participants were minority, one-third reported income <$10,000, and one-fourth reported fair/poor health.Design: Academic-community partnerships adapted CHAT for PCOR priority setting using existing research agendas and interviews with community leaders, clinicians, and key informants.Data Collection: Tablet-based CHAT collected demographic information, individual priorities before and after group deliberation, and groups' priorities.Principal Findings: Individuals and groups prioritized research on Quality of Life, Patient-Doctor, Access, Special Needs, and (by total resources spent) Compare Approaches. Those with less than a high school education were less likely to prioritize New Approaches, Patient-Doctor, Quality of Life, and Families/Caregivers. Blacks were less likely to prioritize research on Causes of Disease, New Approaches, and Compare Approaches than whites. Compare Approaches, Special Needs, Access, and Families/Caregivers were significantly more likely to be selected by individuals after compared to before deliberation.Conclusions: Members of underserved communities, in informed deliberations, prioritized research on Quality of Life, Patient-Doctor, Special Needs, Access, and Compare Approaches. [ABSTRACT FROM AUTHOR]

Importance: Family caregivers of patients with chronic critical illness experience significant psychological distress.Objective: To determine whether family informational and emotional support meetings led by palliative care clinicians improve family anxiety and depression.Design, Setting, and Participants: A multicenter randomized clinical trial conducted from October 2010 through November 2014 in 4 medical intensive care units (ICUs). Adult patients (aged ≥21 years) requiring 7 days of mechanical ventilation were randomized and their family surrogate decision makers were enrolled in the study. Observers were blinded to group allocation for the measurement of the primary outcomes.Interventions: At least 2 structured family meetings led by palliative care specialists and provision of an informational brochure (intervention) compared with provision of an informational brochure and routine family meetings conducted by ICU teams (control). There were 130 patients with 184 family surrogate decision makers in the intervention group and 126 patients with 181 family surrogate decision makers in the control group.Main Outcomes and Measures: The primary outcome was Hospital Anxiety and Depression Scale symptom score (HADS; score range, 0 [best] to 42 [worst]; minimal clinically important difference, 1.5) obtained during 3-month follow-up interviews with the surrogate decision makers. Secondary outcomes included posttraumatic stress disorder experienced by the family and measured by the Impact of Events Scale-Revised (IES-R; total score range, 0 [best] to 88 [worst]), discussion of patient preferences, hospital length of stay, and 90-day survival.Results: Among 365 family surrogate decision makers (mean age, 51 years; 71% female), 312 completed the study. At 3 months, there was no significant difference in anxiety and depression symptoms between surrogate decision makers in the intervention group and the control group (adjusted mean HADS score, 12.2 vs 11.4, respectively; between-group difference, 0.8 [95% CI, -0.9 to 2.6]; P = .34). Posttraumatic stress disorder symptoms were higher in the intervention group (adjusted mean IES-R score, 25.9) compared with the control group (adjusted mean IES-R score, 21.3) (between-group difference, 4.60 [95% CI, 0.01 to 9.10]; P = .0495). There was no difference between groups regarding the discussion of patient preferences (intervention, 75%; control, 83%; odds ratio, 0.63 [95% CI, 0.34 to 1.16; P = .14]). The median number of hospital days for patients in the intervention vs the control group (19 days vs 23 days, respectively; between-group difference, -4 days [95% CI, -6 to 3 days]; P = .51) and 90-day survival (hazard ratio, 0.95 [95% CI, 0.65 to 1.38], P = .96) were not significantly different.Conclusions and Relevance: Among families of patients with chronic critical illness, the use of palliative care-led informational and emotional support meetings compared with usual care did not reduce anxiety or depression symptoms and may have increased posttraumatic stress disorder symptoms. These findings do not support routine or mandatory palliative care-led discussion of goals of care for all families of patients with chronic critical illness.Trial Registration: clinicaltrials.gov Identifier: NCT01230099. [ABSTRACT FROM AUTHOR]

Objectives: Shared decision making is endorsed by critical care organizations; however, there remains confusion about what shared decision making is, when it should be used, and approaches to promote partnerships in treatment decisions. The purpose of this statement is to define shared decision making, recommend when shared decision making should be used, identify the range of ethically acceptable decision-making models, and present important communication skills.Design: The American College of Critical Care Medicine and American Thoracic Society Ethics Committees reviewed empirical research and normative analyses published in peer-reviewed journals to generate recommendations. Recommendations approved by consensus of the full Ethics Committees of American College of Critical Care Medicine and American Thoracic Society were included in the statement.Main Results: Six recommendations were endorsed: 1) DEFINITION: Shared decision making is a collaborative process that allows patients, or their surrogates, and clinicians to make healthcare decisions together, taking into account the best scientific evidence available, as well as the patient's values, goals, and preferences. 2) Clinicians should engage in a shared decision making process to define overall goals of care (including decisions regarding limiting or withdrawing life-prolonging interventions) and when making major treatment decisions that may be affected by personal values, goals, and preferences. 3) Clinicians should use as their "default" approach a shared decision making process that includes three main elements: information exchange, deliberation, and making a treatment decision. 4) A wide range of decision-making approaches are ethically supportable, including patient- or surrogate-directed and clinician-directed models. Clinicians should tailor the decision-making process based on the preferences of the patient or surrogate. 5) Clinicians should be trained in communication skills. 6) Research is needed to evaluate decision-making strategies.Conclusions: Patient and surrogate preferences for decision-making roles regarding value-laden choices range from preferring to exercise significant authority to ceding such authority to providers. Clinicians should adapt the decision-making model to the needs and preferences of the patient or surrogate. [ABSTRACT FROM AUTHOR]

Having patients weigh costs when making medical decisions has been proposed as a way to rein in health care spending. We convened twenty-two focus groups of people with insurance to examine their willingness to discuss health care costs with clinicians and consider costs when deciding among nearly comparable clinical options. We identified the following four barriers to patients' taking cost into account: a preference for what they perceive as the best care, regardless of expense; inexperience with making trade-offs between health and money; a lack of interest in costs borne by insurers and society as a whole; and noncooperative behavior characteristic of a "commons dilemma," in which people act in their own self-interest although they recognize that by doing so, they are depleting limited resources. Surmounting these barriers will require new research in patient education, comprehensive efforts to shift public attitudes about health care costs, and training to prepare clinicians to discuss costs with their patients. [ABSTRACT FROM AUTHOR]

ulrich c.m., taylor c., soeken k., o'donnell p., farrar a., danis m. & grady c. (2010) Everyday ethics: ethical issues and stress in nursing practice. Journal of Advanced Nursing 66(11), 2510-2519. Aim. This paper is a report of a study of the type, frequency, and level of stress of ethical issues encountered by nurses in their everyday practice. Background. Everyday ethical issues in nursing practice attract little attention but can create stress for nurses. Nurses often feel uncomfortable in addressing the ethical issues they encounter in patient care. Methods. A self-administered survey was sent in 2004 to 1000 nurses in four states in four different census regions of the United States of America. The adjusted response rate was 52%. Data were analysed using descriptive statistics, cross-tabulations and Pearson correlations. Results. A total of 422 questionnaires were used in the analysis. The five most frequently occurring and most stressful ethical and patient care issues were protecting patients' rights; autonomy and informed consent to treatment; staffing patterns; advanced care planning; and surrogate decision-making. Other common occurrences were unethical practices of healthcare professionals; breaches of patient confidentiality or right to privacy; and end-of-life decision-making. Younger nurses and those with fewer years of experience encountered ethical issues more frequently and reported higher levels of stress. Nurses from different regions also experienced specific types of ethical problems more commonly. Conclusion. Nurses face daily ethical challenges in the provision of quality care. To retain nurses, targeted ethics-related interventions that address caring for an increasingly complex patient population are needed. [ABSTRACT FROM AUTHOR]

Background A common dilemma that confronts physicians in clinical practice is the allocation of scarce resources. Yet the strategies used by physicians in actual situations of resource constraint have not been studied. This study explores the strategies and rationales reported by physicians in situations of resource constraints encountered in practice. Methods A national survey of US internists, oncologists, and intensive care specialists was performed by computer-assisted telephone interviews. As part of this survey, we asked physicians to tell us about a recent ethical dilemma encountered in practice. A subset of respondents reported difficulties regarding resource allocation. Transcripts of open-ended responses were coded for content based on consensus. Results Of the 600 physicians originally identified, 537 were eligible and 344 participated (response rate, 64%). Internists do not make allocation decisions alone but rather engage in negotiation in their resolution. Furthermore, these decisions are not made as dichotomous choices. Rather they often involve alternative solutions in the face of complexities of both the health care system and situations where limited resources must be allocated. Justice is not commonly the justification for rationing. Conclusion Physicians’ experiences in situations of resource constraints appear to be more complex than the normative literature on health care rationing assumes. In addition, reasoning about justice in health care seems to play only a small part in clinical decision making. Bridging this gap could be an important step in fostering fair allocation of resources in difficult cases. [ABSTRACT FROM AUTHOR]