Little is known about communication between patients, families, and healthcare providers regarding ethical concerns that patients and families experience in the course of illness and medical care. To ...address this gap in the literature, we surveyed patients and family members to learn about their ethical concerns and the extent to which they discussed them with their healthcare providers.
We surveyed adult, English-speaking patients and family members receiving inpatient care in five hospitals in the Washington DC-Baltimore metropolitan area from July 2017 to March 2020. Descriptive statistics were used to determine the frequency, comfortableness, and helpfulness of discussions regarding ethical concerns experienced when sick or receiving medical care. Univariable and multivariable stepwise logistic regression models were used to identify associations between healthcare provider and respondent characteristics and attitudes and (1) the likelihood of speaking to a healthcare provider about their ethical concern and (2) their level of comfort during these discussions.
Of 468 respondents who experienced ethical issues, 299 (64%) reported discussing the situation with a member of their healthcare team; 74% (197/265) of respondents who had such a discussion found the discussion comfortable, and 77% (176/230) of respondents found the discussion helpful. To make discussions more comfortable and helpful, respondents proposed suggestions in open-ended responses involving (1) content and quality of communication; (2) positive healthcare provider qualities such as empathy, open-mindedness, knowledge, honesty, and trustworthiness; and (3) other contextual factors including having adequate time and available resources.
Patients and families often have ethical concerns that they discuss with clinicians, and they want clinicians to be routinely receptive and attentive to such discussions.
As hospitals have grown more complex, the ethical concerns they confront have grown correspondingly complicated. Many hospitals have consequently developed health care ethics programs (HCEPs) that ...include far more than ethics consultation services alone. Yet systematic research on these programs is lacking.
Based on a national, cross-sectional survey of a stratified sample of 600 US hospitals, we report on the prevalence, scope, activities, staffing, workload, financial compensation, and greatest challenges facing HCEPs.
Among 372 hospitals whose informants responded to an online survey, 97% of hospitals have HCEPs. Their scope includes clinical ethics functions in virtually all hospitals, but includes other functions in far fewer hospitals: ethical leadership (35.7%), regulatory compliance (29.0%), business ethics (26.2%), and research ethics (12.6%). HCEPs are responsible for providing ongoing ethics education to various target audiences including all staff (77.0%), nurses (59.9%), staff physicians (49.0%), hospital leadership (44.2%), medical residents (20.3%) and the community/general public (18.4%). HCEPs staff are most commonly involved in policy work through review of existing policies but are less often involved in development of new policies. HCEPs have an ethics representative in executive leadership in 80.5% of hospitals, have representation on other hospital committees in 40.7%, are actively engaged in community outreach in 22.6%, and lead large-scale ethics quality improvement initiatives in 17.7%. In general, major teaching hospitals and urban hospitals have the most highly integrated ethics programs with the broadest scope and greatest number of activities. Larger hospitals, academically affiliated hospitals, and urban hospitals have significantly more individuals performing HCEP work and significantly more individuals receiving financial compensation specifically for that work. Overall, the most common greatest challenge facing HCEPs is resource shortages, whereas underutilization is the most common greatest challenge for hospitals with fewer than 100 beds. Respondents' strategies for managing challenges include staff training and additional funds.
While this study must be cautiously interpreted due to its limitations, the findings may be useful for understanding the characteristics of HCEPs in US hospitals and the factors associated with these characteristics. This information may contribute to exploring ways to strengthen HCEPs.
"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.
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.
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.
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.
Discussions of patient-centred care and patient autonomy in bioethics have tended to focus on the decision-making context and the process of obtaining informed consent, leaving open the question of ...how patients ought to be counselled in the daily maintenance of their health and management of chronic disease. Patient activation is an increasingly prominent counselling approach and measurement tool that aims to improve patients’ confidence and skills in managing their own health conditions. The strategy, which has received little conceptual or ethical analysis, raises important questions about how clinicians ought to foster confidence and a sense of control in their patients without exposing them to blame, stigma and other harms. In this paper, we describe patient activation, discuss its relationship to personal responsibility, autonomy and health disparities, and make recommendations regarding its use and measurement.
Voices of under-resourced communities are recognised as important yet are often unheard in decisions about healthcare resource allocation. Deliberative public engagement can serve as an effective ...mechanism for involving communities in establishing nutrition priorities. This study sought to identify the priorities of community members of a South African township, Soweto, and describe the underlying values driving their prioritisation process, to improve nutrition in the first 1000 days of life.
We engaged 54 community members (28 men and 26 women aged > 18 years) from Soweto. We conducted seven group discussions to determine how to allocate limited resources for prioritising nutrition interventions. We used a modified public engagement tool: CHAT (Choosing All Together) which presented 14 nutrition intervention options and their respective costs. Participants deliberated and collectively determined their nutritional priorities. Choices were captured quantitatively, while group discussions were audio-recorded. A thematic analysis was undertaken to identify the reasons and values associated with the selected priorities.
All groups demonstrated a preference to allocate scarce resources towards three priority interventions-school breakfast provisioning, six-months paid maternity leave, and improved food safety. All but one group selected community gardens and clubs, and five groups prioritised decreasing the price of healthy food and receiving job search assistance. Participants' allocative decisions were guided by several values implicit in their choices, such as fairness and equity, efficiency, social justice, financial resilience, relational solidarity, and human development, with a strong focus on children. Priority interventions were deemed critical to supporting children's optimal development and well-being, interrupting the intergenerational cycle of poverty and poor human development in the community.
Our study demonstrates how public engagement can facilitate the incorporation of community values and programmatic preferences into nutrition priority setting, enabling a responsive approach to local community needs, especially in resource constrained contexts. Findings could guide policy makers to facilitate more appropriate decisions and to improve nutrition in the first 1000 days of life.
One in five Americans dies following treatment in an intensive care unit (ICU), and evidence indicates the need to improve end-of-life care for ICU patients. We conducted this study to elicit the ...views and experiences of ICU directors regarding barriers to optimal end-of-life care and to identify the type, availability, and perceived benefit of specific strategies that may improve this care.
Self-administered mail survey.
Six hundred intensive care units.
A random, nationally representative sample of nursing and physician directors of 600 adult ICUs in the United States.
Mail survey.
We asked participants about barriers to end-of-life care (1 = huge to 5 = not at all a barrier), perceived benefit of strategies to improve end-of-life care, and availability of these strategies. From 468 ICUs (78.0% of sample), 590 ICU directors participated (406 nurses 65.1% response and 184 physicians 31.7% response). Respondents had a mean of 16.6 yrs (sd 7.6 yrs) of ICU experience. Important barriers to better end-of-life care included patient/family factors, including unrealistic patient/family expectations 2.5 (1.0), inability of patients to participate in discussions 2.7 (0.9), and lack of advance directives 2.9 (1.0); clinician factors, which included insufficient physician training in communication 2.9 (1.1) and competing demands on physicians' time 3.0 (1.1); and institution/ICU factors, such as suboptimal space for family meetings 3.5 (1.2) and lack of a palliative care service 3.4 (1.2). More than 80% of respondents rated 14 of 14 strategies as likely to improve end-of-life care, including trainee role modeling by experienced clinicians, clinician training in communication and symptom management, regular meetings of senior clinicians with families, bereavement programs, and end-of-life care quality monitoring. However, few of these strategies were widely available.
Intensive care unit directors perceive important barriers to optimal end-of-life care but also universally endorse many practical strategies for quality improvement.
The primary goal of this study was to address the documented deficiencies in end-of-life care (EOLC) in intensive care unit settings by identifying key EOLC domains and related quality indicators for ...use in the intensive care unit through a consensus process. A second goal was to propose specific clinician and organizational behaviors and interventions that might be used to improve these EOLC quality indicators.
Participants were the 36 members of the Robert Wood Johnson Foundation (RWJF) Critical Care End-of-Life Peer Workgroup and 15 nurse-physician teams from 15 intensive care units affiliated with the work group members. Fourteen adult medical, surgical, and mixed intensive care units from 13 states and the District of Columbia in the United States and one mixed intensive care unit in Canada were represented.
An in-depth literature review was conducted to identify articles that assessed the domains of quality of EOLC in the intensive care unit and general health care. Consensus regarding the key EOLC domains in the intensive care unit and quality performance indicators within each domain was established based on the review of the literature and an iterative process involving the authors and members of the RWJF Critical Care End-of-Life Peer Workgroup. Specific clinician and organizational behaviors and interventions to address the proposed EOLC quality indicators within the domains were identified through a collaborative process with the nurse-physician teams in 15 intensive care units.
Seven EOLC domains were identified for use in the intensive care unit: a) patient- and family-centered decision making; b) communication; c) continuity of care; d) emotional and practical support; e) symptom management and comfort care; f) spiritual support; and g) emotional and organizational support for intensive care unit clinicians. Fifty-three EOLC quality indicators within the seven domains were proposed. More than 100 examples of clinician and organizational behaviors and interventions that could address the EOLC quality indicators in the intensive care unit setting were identified.
These EOLC domains and the associated quality indicators, developed through a consensus process, provide clinicians and researchers with a framework for understanding quality of EOLC in the intensive care unit. Once validated, these indicators might be used to improve the quality of EOLC by serving as the components of an internal or external audit evaluating EOLC continuous quality improvement efforts in intensive care unit settings.
Globally, as countries move towards universal health coverage (UHC), public participation in decisionmaking is particularly valuable to inform difficult decisions about priority setting and resource ...allocation. In South Africa (SA), which is moving towards UHC, public participation in decision-making is entrenched in policy documents yet practical applications are lacking. Engagement methods that are deliberative could be useful in ensuring the public participates in the priority setting process that is evidence-based, ethical, legitimate, sustainable and inclusive. Methods modified for the country context may be more relevant and effective. To prepare for such a deliberative process in SA, we aimed to modify a specific deliberative engagement tool - the CHAT (Choosing All Together) tool for use in a rural setting.
Desktop review of published literature and policy documents, as well as 3 focus groups and modified Delphi method were conducted to identify health topics/issues and related interventions appropriate for a rural setting in SA. Our approach involved a high degree of community and policy-maker/expert participation. Qualitative data were analysed thematically. Cost information was drawn from various national sources and an existing actuarial model used in previous CHAT exercises was employed to create the board.
Based on the outcomes, 7 health topics/issues and related interventions specific for a rural context were identified and costed for inclusion. These include maternal, new-born and reproductive health; child health; woman and child abuse; HIV/AIDS and tuberculosis (TB); lifestyle diseases; access; and malaria. There were variations in priorities between the 3 stakeholder groups, with community-based groups emphasizing issues of access. Violence against women and children and malaria were considered important in the rural context.
The CHAT SA board reflects health topics/issues specific for a rural setting in SA and demonstrates some of the context-specific coverage decisions that will need to be made. Methodologies that include participatory principles are useful for the modification of engagement tools like CHAT and can be applied in different country contexts in order to ensure these tools are relevant and acceptable. This could in turn impact the success of the implementation, ultimately ensuring more effective priority setting approaches.
BackgroundForcibly displaced people represent a huge humanitarian problem globally. At the end of 2020, the total number was 82,4 million; from those, 34,4 million were refugees, asylum seekers, and ...Venezuelan displaced abroad. Forcibly displaced people were identified as priority populations during the pandemic due to their risk of being the last served populations with healthcare. This paper aimed to identify if this population was prioritized in the COVID-19 national response plans of a sample of 86 countries.MethodsThis study is part of a document analysis of 86 COVID-19 national response plans, assessing the degree of comply to quality parameters of effective priority setting. One of the parameters included was the degree to which vulnerable populations such as forcibly displaced people were explicitly prioritized for receiving COVID-19 related interventions or for continuity of non-COVID healthcare services. The analysis involved assessing whether and how forcibly displaced people were prioritized in the COVID-19 national response plans. This was compared with the displaced populations identified in the host countries’ UNHCR Forced Displacement 2020 report.ResultsOnly five countries among 86 analyzed prioritized forcibly displaced people in their COVID-19 national response plans. Among the top ten forcibly displaced people hosting countries, Uganda was the only one with an explicit prioritization of this vulnerable group. Although Turkey, Colombia, and Germany account for nearly one-fifth (6,6 million) of refugees, asylum seekers and Venezuelans displaced abroad, none of the COVID-19 response plans of these countries prioritized these populations.DiscussionFew countries recognized forcibly displaced people as a vulnerable population in their COVID-19 response and preparedness plans. Governments may have incorporated actions and interventions for these vulnerable groups after publishing the COVID-19 response plans. It would be essential to evaluate the impact of this lack of prioritization on the health and wellbeing of these population groups.
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