Clinical Ethicists Awakened: Addressing Two Generations of Clinical Ethics Issues Involving Undocumented Patients.

Because the United States has failed to provide a pathway to citizenship for its long-term undocumented population, clinical ethicists have more than 20 years of addressing issues that arise in caring for this population. I illustrate that these challenges fall into two sets of issues. First-generation issues involve finding ethical ways to treat and discharge patients who are uninsured and ineligible for safety-net resources. More recently, ethicists have been invited to help address second-generation issues that involve facilitating the presentation for care of undocumented patients. In the current environment of widespread fear of deportation in the immigrant community, ethicists are working with health care providers to address patient concerns that prevent them from seeking care. I illustrate that in both generations of issues, values implicit within health care, namely, caring, efficiency, and promotion of public health, guide the strategies that are acceptable and recommended.

Appeal to the Rule of Rescue in health care: discriminating and not benevolent?

Thirty years of debate have passed since the term "Rule of Rescue" has been introduced into medical ethics. Its main focus was on whether or why medical treatment for acute conditions should have priority over preventive measures irrespective of opportunity costs. Recent contributions, taking account of the widespread reluctance to accept purely efficiency-oriented prioritization approaches, advance another objection: Prioritizing treatment, they hold, discriminates against statistical lives. The reference to opportunity costs has also been renewed in a distinctly ethical fashion: It has been stipulated that favoring help for identifiable lives amounts to a lack of benevolence for one's fellow creatures. The present article argues against both objections. It suggests that the debate's focus on consequences (deaths or severe ill health) should be reoriented by asking which aspects of such states of affairs are actually attributable to a decision maker who judges within a specific situation of choice.

What information and the extent of information research participants need in informed consent forms: a multi-country survey.

BACKGROUND: The use of lengthy, detailed, and complex informed consent forms (ICFs) is of paramount concern in biomedical research as it may not truly promote the rights and interests of research participants. The extent of information in ICFs has been the subject of debates for decades; however, no clear guidance is given. Thus, the objective of this study was to determine the perspectives of research participants about the type and extent of information they need when they are invited to participate in biomedical research. METHODS: This multi-center, cross-sectional, descriptive survey was conducted at 54 study sites in seven Asia-Pacific countries. A modified Likert-scale questionnaire was used to determine the importance of each element in the ICF among research participants of a biomedical study, with an anchored rating scale from 1 (not important) to 5 (very important). RESULTS: Of the 2484 questionnaires distributed, 2113 (85.1%) were returned. The majority of respondents considered most elements required in the ICF to be 'moderately important' to 'very important' for their decision making (mean score, ranging from 3.58 to 4.47). Major foreseeable risk, direct benefit, and common adverse effects of the intervention were considered to be of most concerned elements in the ICF (mean score = 4.47, 4.47, and 4.45, respectively). CONCLUSIONS: Research participants would like to be informed of the ICF elements required by ethical guidelines and regulations; however, the importance of each element varied, e.g., risk and benefit associated with research participants were considered to be more important than the general nature or technical details of research. Using a participant-oriented approach by providing more details of the participant-interested elements while avoiding unnecessarily lengthy details of other less important elements would enhance the quality of the ICF.

The ethics of caring for hospital-dependent patients.

BACKGROUND: Hospital-dependent patients are individuals who are repeatedly readmitted to the hospital because their acute medical needs cannot be met elsewhere. Unlike the chronically critically ill, these patients do not have a continuous need for life-sustaining equipment and can experience periods of relative stability where they have a good quality of life. However, some end up spending months or even years in the hospital receiving resource-intensive care because they are unable to be safely discharged, despite an initial optimistic prognosis. It is hard to reliably identify these patients on admission and more research is needed to better understand the unique medical needs of this population. But the inability to safely discharge these patients to their home or to a skilled nursing facility without rapid readmissions also creates ethical implications for the physicians who care for them. The aim of this paper is to clarify some of the ethical considerations involved in caring for hospital-dependent patients. MAIN BODY: Among physicians, the care of hospital-dependent patients is likely to disproportionately affect hospitalists and intensivists, whose care is often evaluated in terms of reducing patient length of stay and readmissions. Because hospital-dependent patients' medical needs thwart the traditional goal of safe discharge, both clinical ethics and physicians' professional obligations are implicated by their care. The inability to reliably identify these patients early can complicate discussions about treatment goals and informed consent. Similarly, the tremendous dedication of limited resources to these patients without safe discharge back to the community may raise concerns about the just allocation of healthcare resources. CONCLUSION: Our current acute care hospitals are not designed to provide long-term care for hospital-dependent patients. Unfortunately, safe discharge options remain elusive for these patients. Further research and support of this population is needed to more reliably identify hospital-dependent patients on admission, better inform the discussions of short- and long-term treatment goals, and more wisely allocate resources both within our acute care hospitals and larger healthcare system.

[The Rule of Rescue - Irrational and Discriminating?] / Rule of Rescue vs. Rettung statistischer Leben.

State of the debate: The "Rule of Rescue" refers to the practice that, in order to save people from immediate peril, societies incur high costs largely irrespective of the fact that many more lives could be saved under alternative uses of the resources. The practice has been found difficult to explain, let alone justify, and has often been criticized. In the early literature in the context of the Oregon rationing experiment, the irrationality objection dominated in view of the obvious lack to consider opportunity costs. More recent contributions, taking account of the declining support for purely efficiency-oriented prioritization approaches, advance an equity objection: The practice discriminates against statistical lives. Intent of the present contribution: This article provides a critical assessment of both objections. Results: The following contentions result from the analysis: 1. The equity objection is unfounded; 2. Following the rule of rescue is (in a certain sense) inefficient, but it is not irrational; 3. The criticized judgments result from deep-seated shortcomings in the action-theoretical concepts used (or rather, omitted) in the literature. These shortcomings are inherent in the consequentialist framework dominating the debate and deserve more attention.

Medical Need, Equality, and Uncertainty.

Many hold that distributing healthcare according to medical need is a requirement of equality. Most egalitarians believe, however, that people ought to be equal on the whole, by some overall measure of well-being or life-prospects; it would be a massive coincidence if distributing healthcare according to medical need turned out to be an effective way of promoting equality overall. I argue that distributing healthcare according to medical need is important for reducing individuals' uncertainty surrounding their future medical needs. In other words, distributing healthcare according to medical need is a natural feature of healthcare insurance; it is about indemnity, not equality.

Ethics, Economics and Dentistry for Individuals with Disabilities in New York State.

The ADA Principles of Ethics and Code of Professional Conduct is an expression of the obligation occurring between the profession and society to meet the oral health needs of the public. At a time of economic concerns for the profession, suggestions are made to bring together the ethics of the profession and the need to expand services to underserved populations, including individuals with disabilities and the poor. The profession's effort to secure economic support for such an effort is possible with increased legislative awareness of the magnitude of the problem. To this end, the number of individuals with disabilities was developed for each Congressional district in New York State in an effort to challenge members of Congress to recognize the need in terms of their constituents, rather than in terms of the tens of millions with disabilities in the United States-which become "just numbers," not actual people.

Universal health care and equity: evidence of maternal health based on an analysis of demographic and household survey data.

INTRODUCTION: The drive toward universal health coverage (UHC) is central to the post 2015 agenda, and is incorporated as a target in the new Sustainable Development Goals. However, it is recognised that an equity dimension needs to be included when progress to this goal is monitored. WHO have developed a monitoring framework which proposes a target of 80% coverage for all populations regardless of income and place of residence by 2030, and this paper examines the feasibility of this target in relation to antenatal care and skilled care at delivery. METHODOLOGY: We analyse the coverage gap between the poorest and richest groups within the population for antenatal care and presence of a skilled attendant at birth for countries grouped by overall coverage of each maternal health service. Average annual rates of improvement needed for each grouping (disaggregated by wealth quintile and urban/rural residence) to reach the goal are also calculated, alongside rates of progress over the past decades for comparative purposes. FINDINGS: Marked inequities are seen in all groups except in countries where overall coverage is high. As the monitoring framework has an absolute target countries with currently very low coverage are required to make rapid and sustained progress, in particular for the poorest and those living in rural areas. The rate of past progress will need to be accelerated markedly in most countries if the target is to be achieved, although several countries have demonstrated the rate of progress required is feasible both for the population as a whole and for the poorest. CONCLUSIONS: For countries with currently low coverage the target of 80% essential coverage for all populations will be challenging. Lessons should be drawn from countries who have achieved rapid and equitable progress in the past.

Reinterpreting Responsiveness for Health Systems Research in Low and Middle-Income Countries.

The ethical concept of responsiveness has largely been interpreted in the context of international clinical research. In light of the increasing conduct of externally funded health systems research (HSR) in low- and middle-income countries (LMICs), this article examines how responsiveness might be understood for such research and how it can be applied. It contends that four features (amongst others) set HSR in LMICs apart from international clinical research: a focus on systems; being context-driven; being policy-driven; and being closely linked to development objectives. These features support reinterpreting responsiveness for HSR in LMICs as responsiveness to systems needs, where health system performance assessments can be relied upon to identify systems needs, and/or responsiveness to systems priorities, which entails aligning research with HSR priorities set through country-owned processes involving national and sub-national policymakers from host countries. Both concepts may be difficult to achieve in practice. Country ownership is not an established fact for many countries and alignment to their priorities may be meaningless without it. It is argued that more work is, therefore, needed to identify strategies for how the responsiveness requirement can be ethically fulfilled for HSR in LMICs under non-ideal conditions such as where host countries have not set HSR priorities via country-owned processes. Embeddedness is proposed as one approach that could be the focus of further development.

Ethical Study on the Reform and Development of Medical and Health Services in China.

At an early stage of its foundation, new China became clear about the nature of public welfare and quickly developed medical and health services, which was well received by the World Health Organization. The marketization and the reduction of input into medical and health services from the 1980s created severe adverse consequences. After the SARS' outbreak in 2003, China started to give serious consideration to its medical and health system, and to work at developing medical and health services. The new healthcare reform launched in 2009 re-emphasizes fairness and public welfare, and China's achievements have been remarkable. Of course, there are still many problems to be solved in the reform, which also paves the way for increasing the reform in future.

How can bedside rationing be justified despite coexisting inefficiency? The need for 'benchmarks of efficiency'.

Imperfect efficiency in healthcare delivery is sometimes given as a justification for refusing to ration or even discuss how to pursue fair rationing. This paper aims to clarify the relationship between inefficiency and rationing, and the conditions under which bedside rationing can be justified despite coexisting inefficiency. This paper first clarifies several assumptions that underlie the classification of a clinical practice as being inefficient. We then suggest that rationing is difficult to justify in circumstances where the rationing agent is or should be aware of and contributes to clinical inefficiency. We further explain the different ethical implications of this suggestion for rationing decisions made by clinicians. We argue that rationing is more legitimate when sufficient efforts are undertaken to decrease inefficiency in parallel with efforts to pursue unavoidable but fair rationing. While the qualifier 'sufficient' is crucial here, we explain why 'sufficient efforts' should be translated into 'benchmarks of efficiency' that address specific healthcare activities where clinical inefficiency can be decreased. Referring to recent consensus papers, we consider some examples of specific clinical situations where improving clinical inefficiency has been recommended and consider how benchmarks for efficiency might apply. These benchmarks should state explicitly how much inefficiency shall be reduced in a reasonable time range and why these efforts are 'sufficient'. Possible strategies for adherence to benchmarks are offered to address the possibility of non-compliance.

Ethical considerations related to participation and partnership: an investigation of stakeholders' perceptions of an action-research project on user fee removal for the poorest in Burkina Faso.

BACKGROUND: Healthcare user fees present an important barrier for accessing services for the poorest (indigents) in Burkina Faso and selective removal of fees has been incorporated in national healthcare planning. However, establishing fair, effective and sustainable mechanisms for the removal of user fees presents important challenges. A participatory action-research project was conducted in Ouargaye, Burkina Faso, to test mechanisms for identifying those who are indigents, and funding and implementing user fee removal. In this paper, we explore stakeholder perceptions of ethical considerations relating to participation and partnership arising in the action-research. METHODS: We conducted 39 in-depth interviews to examine ethical issues associated with the action-research. Respondents included 14 individuals identified as indigent through the community selection process, seven members of village selection committees, six local healthcare professionals, five members of the management committees of local health clinics, five members of the research team, and four regional or national policy-makers. Using constant comparative techniques, we carried out an inductive thematic analysis of the collected data. RESULTS: The Ouargaye project involved a participatory model, included both implementation and research components, and focused on a vulnerable group within small, rural communities. Stakeholder perceptions and experiences relating to the participatory approach and reliance on multiple partnerships in the project were associated with a range of ethical considerations related to 1) seeking common ground through communication and collaboration, 2) community participation and risk of stigmatization, 3) impacts of local funding of the user fee removal, 4) efforts to promote fairness in the selection of the indigents, and 5) power relations and the development of partnerships. CONCLUSIONS: This investigation of the Ouargaye project serves to illuminate the distinctive ethical terrain of a participatory public health action-research project. In carrying out such projects, careful attention and effort is needed to establish and maintain respectful relationships amongst those involved, acknowledge and address differences of power and position, and evaluate burdens and risks for individuals and groups.

[Integrative and person-centred health care from a health system perspective]. / Integrative und personenzentrierte Gesundheitsversorgung aus der Perspektive des Gesundheitssystems.

OBJECTIVE: Many health-care systems are confronted on the one hand side with the challenge to meet care demands of a continuously aging population that suffers from multiple and chronic diseases and, on the other hand side, to adapt health-care services to the preferences of the population. We analyse whether the German health-care system already pursues the objective to deliver integrated, person-centred, interdisciplinary and interprofessional health-care services and which prospects 'integrated and person-centred health care' offers. METHOD: We performed a selective literature analysis. RESULTS: Different from the World Health Organisation or the Institute of Medicine, the German Social Code Book V does not pursue the objective of delivering person-centred health care. However, the introduction of integrated health-care services is explicitly enabled. Yet until now, only 10% of the population are encompassed by such health-care delivery concepts. Clear chances for integrated and person-centred health care exist, e. g., in reducing repeat diagnostic procedures, overcoming failures in communication and information exchange, and encouraging interprofessional health care delivery that up to now often encounter resistance of physicians. CONCLUSION: Legal provisions to reform the German health-care system in the direction of more integrative and person-centred health-care services are already partly in place. What is lacking is a broad implementation and evaluation of such a concept of health-care delivery that is advantageous for the system and preferred by the population.

Moral hazard and supplier-induced demand: empirical evidence in general practice.

Changes in cost sharing and remuneration system in the Netherlands in 2006 led to clear changes in financial incentives faced by both consumers and general practitioner (GPs). For privately insured consumers, cost sharing was abolished, whereas those socially insured never faced cost sharing. The separate remuneration systems for socially insured consumers (capitation) and privately insured consumers (fee-for-service) changed to a combined system of capitation and fee-for-service for both groups. Our first hypothesis was that privately insured consumers had a higher increase in patient-initiated GP contact rates compared with socially insured consumers. Our second hypothesis was that socially insured consumers had a higher increase in physician-initiated contact rates. Data were used from electronic medical records from 32 GP-practices and 35336 consumers in 2005-2007. A difference-in-differences approach was applied to study the effect of changes in cost sharing and remuneration system on contact rates. Abolition of cost sharing led to a higher increase in patient-initiated utilisation for privately insured consumers in persons aged 65 and older. Introduction of fee-for-service for socially insured consumers led to a higher increase in physician-initiated utilisation. This was most apparent in persons aged 25 to 54. Differences in the trend in physician-initiated utilisation point to an effect of supplier-induced demand. Differences in patient-initiated utilisation indicate limited evidence for moral hazard.

The active recruitment of health workers: a defence.

Many organisations in rich countries actively recruit health workers from poor countries. Critics object to this recruitment on the grounds that it has harmful consequences and that it encourages health workers to violate obligations to their compatriots. Against these critics, I argue that the active recruitment of health workers from low-income countries is morally permissible. The available evidence suggests that the emigration of health workers does not in general have harmful effects on health outcomes. In addition, health workers can immigrate to rich countries and also satisfy their obligations to their compatriots. It is consequently unjustified to blame or sanction organisations that actively recruit health workers.

Global health and justice: re-examining our values.

Widening disparities in health within and between nations reflect a trajectory of 'progress' that has 'run its course' and needs to be significantly modified if progress is to be sustainable. Values and a value system that have enabled progress are now being distorted to the point where they undermine the future of global health by generating multiple crises that perpetuate injustice. Reliance on philanthropy for rectification, while necessary in the short and medium terms, is insufficient to address the challenge of economic and other systems spinning out of control. Innovative approaches are required and it is suggested that these could best emerge from in-depth multidisciplinary research supported by endeavours to promote a 'global mind-set.'

Animal research ethics in Africa: is Tanzania making progress?

The significance of animals in research cannot be over-emphasized. The use of animals for research and training in research centres, hospitals and schools is progressively increasing. Advances in biotechnology to improve animal productivity require animal research. Drugs being developed and new interventions or therapies being invented for cure and palliation of all sorts of animal diseases and conditions need to be tested in animals for their safety and efficacy at some stages of their development. Drugs and interventions for human use pass through a similar development process and must be tested pre-clinically in laboratory animals before clinical trials in humans can be conducted. Therefore, animals are important players in research processes which directly and indirectly benefit animals and humans. However, questions remain as to whether these uses of animals consider the best interests of animals themselves. Various research and training institutions in Tanzania have established some guidelines on animal use, including establishing animal ethics committees. However, most institutions have not established oversight committees. In institutions where there may be guidelines and policies, there are no responsible committees or units to directly oversee if and how these guidelines and policies are enforced; thus, implementation becomes difficult or impossible. This paper endeavours to raise some issues associated with the responsible use of animals in research and training in Tanzania and highlights suggestions for improvement of deficiencies that exist in order to bridge the gap between what ought to be practised and what is practised.