Burying our mistakes: Dealing with prognostic uncertainty after severe brain injury

Prognosis after severe brain injury is highly uncertain, and decisions to withhold or withdraw life-sustaining treatment are often made prematurely. These decisions are often driven by a desire to avoid a situation where the patient becomes ‘trapped’ in a condition they would find unacceptable. However, this means that a proportion of patients who would have gone on to make a good recovery, are allowed to die. I propose a shift in practice towards the routine provision of aggressive care, even in cases where the probability of survival and acceptable recovery is thought to be low. In conjunction with this shift, I argue in favour of a presumption towards withdrawing life-sustaining treatment, including artificial nutrition and hydration, when it becomes clear that a patient will not recover to a level that would be acceptable to them. I then respond to three potential objections to this proposal.     

End‐of‐life decision‐making and advance care directives in Italy. A report and moral appraisal of recent legal provisions

The present article reviews the state of public debate and legal provisions concerning end‐of‐life decision‐making in Italy and offers an evaluation of the moral and legal issues involved. The article further examines the content of a recent law concerning informed consent and advance treatment directives, the main court pronouncements that formed the basis for the law, and developments in the public debate and important jurisprudential acts subsequent to its approval. The moral and legal grounds for a positive evaluation of this law, which attests that the patient may withhold or withdraw from life‐prolonging treatment, will be offered with reference to liberal approaches and particularly to the frameworks of care and virtue ethics; but reasons will also be offered in order to consider not only the latter but also broader range of end‐of‐life treatment decisions as morally apt options. In this light, we argue in favour of a further development of the Italian legislation to encompass forms of assisted suicide and active euthanasia.     

Barriers to provision of dental care in long-term care facilities: the confrontation with ageing and death

Objective: The aim of the study was to reveal barriers to providing dental care for residents in long‐term care (LTC) facilities. Design: Participants were selected randomly from the dentist register in Berlin and Saxony, Germany. The sample consisted of 60 self‐employed and 60 employed dentists, a further 60 dentists worked in their own dental practice but also part‐time in an LTC facility. In semi‐structured interviews a questionnaire with 36 statements concerning working conditions, administration and cost, insecurity concerning treatment decisions as well as confrontation with ageing and death was employed. Subsequently, the study participants were asked to rank the four dimensions concerning their impact on the decision against providing dental care in an LTC facility. Results: The random sample was representative in age and gender for the dental register in Berlin and Saxony. Fifty‐six per cent of the participants (63% of the men and 51% of the women; 52% of the self‐employed, 60% of the employed and 56% of the consultant dentists) indicated unfavourable working conditions as biggest obstacle in providing dental care in an LTC‐facility. Thirty‐two per cent of participants rated administration and cost, 7% the insecurity in treatment decisions as major hindrance. Only 5% of the participants rated the confrontation with age and death as substantial barrier. There were no age and gender differences. Dentists in Berlin seemed more concerned about administration and cost of a consultancy activity and less secure in their therapy decisions than the colleagues from Saxony (p < 0.001). Dentists who work partly in LTC facilities were the least concerned about the confrontation with ageing and death (not significant), employed dentist showed the least secure in their treatment decisions (p > 0.001). Conclusion: It can be concluded that the awareness of infra‐structural and financial aspects in providing dental care in LTC facilities should be raised with health politicians and that these aspects should be considered when inaugurating or re‐structuring the consultancy services to LTC facilities. Further it would be desirable to establish more postgraduate training programmes to increase clinical and ethical competence in the area of gerodontology.     

Retrospective study of doctors' "end of life decisions" in caring for mentally handicapped people in institutions in The Netherlands.

OBJECTIVES: To gain insight into the reasons behind and the prevalence of doctors'' decisions at the end of life that might hasten a patient''s death ("end of life decisions") in institutions caring for mentally handicapped people in the Netherlands, and to describe important aspects of the decisions making process. DESIGN: Survey of random sample of doctors caring for mentally handicapped people by means of self completed questionnaires and structured interviews. SUBJECTS: 89 of the 101 selected doctors completed the questionnaire. 67 doctors had taken an end of life decision and were interviewed about their most recent case. MAIN OUTCOME MEASURES: Prevalence of end of life decisions; types of decisions; characteristics of patients; reasons why the decision was taken; and the decision making process. RESULTS: The 89 doctors reported 222 deaths for 1995. An end of life decision was taken in 97 cases (44%); in 75 the decision was to withdraw or withhold treatment, and in 22 it was to relieve pain or symptoms with opiates in dosages that may have shortened life. In the 67 most recent cases with an end of life decision the patients were mostly incompetent (63) and under 65 years old (51). Only two patients explicitly asked to die, but in 23 cases there had been some communication with the patient. In 60 cases the doctors discussed the decision with nursing staff and in 46 with a colleague. CONCLUSIONS: End of life decisions are an important aspect of the institutionalised care of mentally handicapped people. The proportion of such decisions in the total number of deaths is similar to that in other specialties. However, the discussion of such decisions is less open in the care of mental handicap than in other specialties. Because of distinctive features of care in this specialty an open debate about end of life decisions should not be postponed.     

The need for systematic reviews of reasons

There are many ethical decisions in the practice of health research and care, and in the creation of policy and guidelines. We argue that those charged with making such decisions need a new genre of review. The new genre is an application of the systematic review, which was developed over decades to inform medical decision-makers about what the totality of studies that investigate links between smoking and cancer, for example, implies about whether smoking causes cancer. We argue that there is a need for similarly inclusive and rigorous reviews of reason-based bioethics, which uses reasoning to address ethical questions. After presenting a brief history of the systematic review, we reject the only existing model for writing a systematic review of reason-based bioethics, which holds that such a review should address an ethical question. We argue that such a systematic review may mislead decision-makers when a literature is incomplete, or when there are mutually incompatible but individually reasonable answers to the ethical question. Furthermore, such a review can be written without identifying all the reasons given when the ethical questions are discussed, their alleged implications for the ethical question, and the attitudes taken to the reasons. The reviews we propose address instead the empirical question of which reasons have been given when addressing a specified ethical question, and present such detailed information on the reasons. We argue that this information is likely to improve decision-making, both directly and indirectly, and also the academic literature. We explain the limitations of our alternative model for systematic reviews.     

Nationwide study of decisions concerning the end of life in general practice in The Netherlands.

OBJECTIVE--To gain insight into decisions made in general practice about the end of life. DESIGN--Study I: interviews with 405 physicians. Study II: analysis of death certificates with data obtained on 5197 cases in which decisions about the end of life may have been made. Study III: prospective study with doctors from study I: questionnaires used to collect information about 2257 deaths. The information was representative for all deaths in the Netherlands. RESULTS--Over two fifths of all patients in the Netherlands die at home. General practitioners took fewer decisions about the end of life than hospital doctors and doctors in nursing homes (34%, 40%, and 56% of all dying patients, respectively). Specifically, decisions to withhold or withdraw treatment to prolong life were taken less often. Euthanasia or assisted suicide, however, was performed in 3.2% of all deaths in general practice compared with 1.4% in hospital practice. In over half of the cases concerning pain relief or non-treatment general practitioners did not discuss the decision with the patient, mostly because of incapacity of the patient, but in 20% of cases for "paternalistic" reasons. Older general practitioners discussed such decisions less often with their patients. Colleagues were consulted more often if the general practitioner worked in group practice. CONCLUSION--Differences in work situation between general practitioners and hospital doctors and differences between the group of general practitioners contribute to differences in the number and type of decisions about the end of life as well as in the decision making process.     

Allocation of scarce resources in Africa during COVID‐19: Utility and justice for the bottom of the pyramid?

The COVID‐19 pandemic has raised important universal public health challenges. Conceiving ethical responses to these challenges is a public health imperative but must take context into account. This is particularly important in sub‐Saharan Africa (SSA). In this paper, we examine how some of the ethical recommendations offered so far in high‐income countries might appear from a SSA perspective. We also reflect on some of the key ethical challenges raised by the COVID‐19 pandemic in low‐income countries suffering from chronic shortages in health care resources, and chronic high morbidity and mortality from non‐COVID‐19 causes. A parallel is drawn between the distribution of severity of COVID‐19 disease and the classic “Fortune at the bottom of the pyramid” model that is relevant in SSA. Focusing allocation of resources during COVID‐19 on the ‘thick’ part of the pyramid in Low‐to‐Middle Income Countries (LMICs) could be ethically justified on utilitarian and social justice grounds, since it prioritizes a large number of persons who have been economically and socially marginalized. During the pandemic, importing allocation frameworks focused on the apex of the pyramid from the global north may therefore not always be appropriate. In a post‐COVID‐19 world, we need to think strategically about how health care systems can be financed and structured to ensure broad access to adequate health care for all who need it. The root problems underlying health inequity, exposed by COVID‐19, must be addressed, not just to prepare for the next pandemic, but to care for people in resource poor settings in non‐pandemic times.     

CURRENT FUNCTIONS OF ITALIAN ETHICS COMMITTEES: A CROSS‐SECTIONAL STUDY

Background: The rapid pace of progress in medical research, the consequent need for the timely transfer of new knowledge into practice, and the increasing need for ethics support, is making the work of Ethics Committees (ECs) ever more complex and demanding. As a response, ECs in many countries exhibit large variation in number, mandate, organization and member competences. This cross‐sectional study aims to give an overview of the different types of activities of Italian ECs and favour discussion at a European level. Methods: A questionnaire was emailed to all Italian Ethics Committees contained in the national Registry of the Ministry of Health, enquiring whether the EC was conducting, or planning to conduct, 4 specific activities. A telephone interview was conducted to determine reasons for failure to respond. Results: Response rate was 53% (101 respondents out of 191). 20% of ECs restrict their responsibilities to research protocol review, 25% also offer ethical consultation to institutions, support on individual health care decisions and promotes educational initiatives, while the remaining 50% conduct a few of the examined activities to varying degrees. Large variation was observed across different types of hosting institutions and geographical locations. Conclusions: A common European model should be developed, defining EC functions, member selection modalities, necessary member competences, decision‐making criteria and measures for work verification. In the absence of sound empirical evidence, it would be interesting to study the effectiveness and efficiency of the different existing models.     

Ethical Implications of Case‐Based Payment in China: A Systematic Analysis

How health care providers are paid affects how medicine is practiced. It is thus important to assess provider payment models not only from the economic perspective but also from the ethical perspective. China recently started to reform the provider payment model in the health care system from fee‐for‐service to case‐based payment. This paper aims to examine this transition from an ethical perspective. We collected empirical studies on the impact of case‐based payment in the Chinese health care system and applied a systematic ethical matrix that integrates clinical ethics and public health ethics to analyze the empirical findings. We identified eleven prominent ethical issues related to case‐based payment. Some ethical problems of case‐based payment in China are comparable to ethical problems of managed care and diagnosis related groups in high‐income countries. However, in this paper we discuss in greater detail four specific ethical issues in the Chinese context: professionalism, the patient‐physician relationship, access to care and patient autonomy. Based on the analysis, we cautiously infer that case‐based payment is currently more ethically acceptable than fee‐for‐service in the context of China, mainly because it seems to lower financial barriers to access care. Nonetheless, it will be difficult to justify the implementation of case‐based payment if no additional measures are taken to monitor and minimize its existing negative ethical implications.     

Research versus practice: The dilemmas of research ethics in the era of learning health‐care systems

In this article we attempt to answer the question of how the ethical and conceptual framework (ECF) for a learning health‐care system (LHS) affects some of the main controversies in research ethics by addressing five key problems of research ethics: (a) What is the difference between practice and research? (b) What is the relationship between research ethics and clinical ethics? (c) What is the ethical relevance of the principle of clinical equipoise? (d) Does participation in research require a higher standard of informed consent than the practice of medicine? and (e) What ethical principle should take precedence in medicine? These questions allow us to construct two opposite idealized positions on the distinction between research and practice: the integration model and the segregation model of research and practice. We then compare the ECF for an LHS with these two idealized positions. We argue that the ECF for a LHS does not, in fact, solve these problems, but that it is a third, separate position in the relationship between research ethics and clinical ethics. Moreover, we suggest that the ECF for a LHS raises new ethical problems that require additional ethical analysis and justification. Our article contributes to the discussion on the relationship between research ethics and clinical ethics, revealing that although a learning health‐care system may significantly change the landscape of health care, some ethical dilemmas still require resolving on both theoretical and policy‐making levels.     

Latin American healthcare systems in times of pandemic

The COVID‐ 19 pandemic is a critical test for the already overburdened and mostly underfunded public healthcare systems of Latin America. In a region that suffers from severe inequalities, public healthcare systems are the only source of medical care for a large sector of the population who work in the informal economy or are unemployed. State‐run hospitals and clinics are already overstressed by continuous demand for treatment of vector‐borne diseases and community‐acquired infections as well as high rates of non‐communicable diseases. Ideological misconceptions and denial among Latin America’s political leaders prevented timely preparations for the pandemic and added to chronic governance problems. As ethical expertise in Latin America focuses on research ethics, few hospitals in the region have functioning clinical ethics committees or clinical ethics policy, forcing healthcare personnel to make excruciating treatment decisions in an environment dominated by material scarcity and public distrust. This essay examines the emergence of COVID‐19 in Latin America and the serious challenge that it poses for Latin America's public healthcare systems.     

Intersexual Births: The Epistemology of Sex and Ethics of Sex Assignment

This article aims to analyse a possible manner of approaching the birth of intersexual children. We start out by summing up what intersexuality is and how it is faced in the dominant clinical practice (the “treatment paradigm”). We then argue against this paradigm, in favour of a postponement of genital surgery. In the second part of this paper, we take into consideration the general question of whether only two existing sexes are to be recognized, arguing in favour of an expansion of sex categories. In the third part, we illustrate the reasons supporting provisional sex attribution: the child’s best interest and respect for their developing moral autonomy. This position aims to increase the child’s well-being and self-determination, limiting parents’ freedom to take decisions on behalf of others, in particular, those decisions concerning basic aspects of their children’s personal identity.     

Triage: How do we prioritize health care for landscapes?

Summary We explore the potential use of health care as a metaphor for landscape-scale conservation. In human health-care provision, a range of care options is generally available to cover the various levels of treatment required and the degree of urgency of that treatment. The concept of triage is frequently used in emergency situations where many people may be injured and decisions have to be made on the relative urgency of treatment for different individuals versus the relative likelihood of the success of that treatment. Indeed, the need to decide on level and type of care extends throughout health-care provision, and the array of health-care options available can be displayed on a grid that considers relative level of need or threat and the probability of recovery. A similar grid can be constructed for landscape management, which considers level of threat and the probability of system persistence or recovery. The grid differentiates between a variety of scenarios ranging from the need for prompt management action to protect or restore important habitat through to preventative threat minimization. We suggest that the broad concept of triage goes beyond the simple allocation of patients, landscapes or species into urgent, not urgent, and terminal categories and, instead, offers a rational basis for considering allocation of appropriate levels of management to different situations. We also suggest that the practice of restoration has much to learn from health care, where decisions are made daily on the allocation of appropriate levels of care.     

Fair Resource Allocation to Health Research: Priority Topics for Bioethics Scholarship

This article draws attention to the limited amount of scholarship on what constitutes fairness and equity in resource allocation to health research by individual funders. It identifies three key decisions of ethical significance about resource allocation that research funders make regularly and calls for prioritizing scholarship on those topics – namely, how health resources should be fairly apportioned amongst public health and health care delivery versus health research, how health research resources should be fairly allocated between health problems experienced domestically versus other health problems typically experienced by disadvantaged populations outside the funder's country, and how domestic and non‐domestic health research funding should be further apportioned to different areas, e.g. types of research and recipients. These three topics should be priorities for bioethics research because their outcomes have a substantial bearing on the achievement of health justice. The proposed agenda aims to move discussion on the ethics of health research funding beyond its current focus on the mismatch between worldwide basic and clinical research investment and the global burden of disease. Individual funders’ decision‐making on whether and to what extent to allocate resources to non‐domestic health research, health systems research, research on the social determinants of health, capacity development, and recipients in certain countries should also be the focus of ethical scrutiny.     

Health ethics and Indigenous ethnocide

In colonial societies such as Canada the implications of colonialism and ethnocide (or cultural genocide) for ethical decision‐making are ill‐understood yet have profound implications in health ethics and other spheres. They combine to shape racism in health care in ways, sometimes obvious, more often subtle, that are inadequately understood and often wholly unnoticed. Along with overt experiences of interpersonal racism, Indigenous people with health care needs are confronted by systemic racism in the shaping of institutional structures, hospital policies and in resource allocation decisions. Above all, racism is a function of state law – of the unilateral imposition of the settler society law on Indigenous communities. Indeed, the laws, including health laws, are social determinants of the ill‐health of Indigenous peoples. This article describes the problem of Indigenous ethnocide and explores its ethical implications. It thereby problematizes the role of law in health ethics.     

German law on circumcision and its debate: How an ethical and legal issue turned political

The article aims to illuminate the recent debate in Germany about the legitimacy of circumcision for religious reasons. The aim is both to evaluate the new German law allowing religious circumcision, and to outline the resulting conflict between the surrounding ethical and legal issues. We first elucidate the diversity of legal and medical views on religious circumcision in Germany. Next we examine to what extent invasive and irreversible physical interventions on infant boys unable to given their consent should be carried out for non‐medical reasons. To this end, the potential benefits and harms of circumcision for non‐medical reasons are compared. We argue that circumcision does not provide any benefits for the ‘child as a child’ and poses only risks to boys. We then set out to clarify and analyse political (rather than ethical) justifications of the new circumcision law. We demonstrate through this analysis how the circumcision debate in Germany has been transformed from a legal and ethical problem into a political issue, due at least in part to Germany's unique historical context. Although such a particular political sensibility is entirely comprehensible, it raises particular problems when it comes to framing and responding to medical ethical issues – as in the case of religious circumcision.     

Ectogestation ethics: The implications of artificially extending gestation for viability,newborn resuscitation and abortion

Recent animal research suggests that it may soon be possible to support the human fetus in an artificial uterine environment for part of a pregnancy. A technique of extending gestation in this way (“ectogestation”) could be offered to parents of extremely premature infants (EPIs) to improve outcomes for their child. The use of artificial uteruses for ectogestation could generate ethical questions because of the technology’s potential impact on the point of “viability”—loosely defined as the stage of pregnancy beyond which the fetus may survive external to the womb. Several medical decisions during the perinatal period are based on the gestation at which infants are considered viable, for example decisions about newborn resuscitation and abortion, and ectogestation has the potential to impact on these. Despite these possible implications, there is little existing evidence or analysis of how this technology would affect medical practice. In this paper, we combine empirical data with ethical analysis. We report a survey of 91 practicing Australian obstetricians and neonatologists; we aimed to assess their conceptual understanding of “viability,” and what ethical consequences they envisage arising from improved survival of EPIs. We also assess what the ethical implications of extending gestation should be for newborn and obstetric care. We analyze the concept of viability and argue that while ectogestation might have implications for the permissibility of neonatal life-prolonging treatment at extremely early gestation, it should not necessarily have implications for abortion policy. We compare our ethical findings with the results of the survey.     

Intensive care triage: priority should be independent of whether patients are already receiving intensive care

Intensive care units (ICUs) are not always able to admit all patients who would benefit from intensive care. Pressure on ICU beds is likely to be particularly high during times of epidemics such as might arise in the case of swine influenza. In making choices as to which patients to admit, the key US guidelines state that significant priority should be given to the interests of patients who are already in the ICU over the interests of patients who would benefit from intensive care but who have not been admitted. We examine four reasons that in principle might justify such a prioritization rule and conclude that none is convincing. We argue that the current location of patients should not, in principle, affect their priority for intensive care. We show, however, that under some but not all circumstances, maximizing lives saved by intensive care might require continuing to treat in the ICU a patient already admitted rather than transferring that patient out of the unit in order to admit a sicker patient who would also benefit more from intensive care. We conclude that further modelling is required in order to clarify what practical policies would maximize lives saved by intensive care.     

MORAL FICTIONS AND MEDICAL ETHICS

Conventional medical ethics and the law draw a bright line distinguishing the permitted practice of withdrawing life‐sustaining treatment from the forbidden practice of active euthanasia by means of a lethal injection. When clinicians justifiably withdraw life‐sustaining treatment, they allow patients to die but do not cause, intend, or have moral responsibility for, the patient's death. In contrast, physicians unjustifiably kill patients whenever they intentionally administer a lethal dose of medication. We argue that the differential moral assessment of these two practices is based on a series of moral fictions – motivated false beliefs that erroneously characterize withdrawing life‐sustaining treatment in order to bring accepted end‐of‐life practices in line with the prevailing moral norm that doctors must never kill patients. When these moral fictions are exposed, it becomes apparent that conventional medical ethics relating to end‐of‐life decisions is radically mistaken.