Contributors.

Contributors.

Contributors.

Paradoxically, the unifying characteristic of our annual Open Forum issues is the absence of any particular thematic topic, a common thread of concern that is examined and discussed from multiple perspectives. What the papers do share, however, is a challenge and invitation to readers to take up the arguments presented here and advance the discussions with their own debates.

Ethics consultation is the most engaged aspect of clinical ethics, a field focused on ethical issues, questions, and conflicts arising in the course of patient care and delivery of healthcare services. Despite the skepticism of some academic bioethicists and criticism expressed by social commentators, clinical ethics, which began in North America, has expanded to Europe and many other parts of the world with the proliferation of healthcare institution ethics and ethics consultation support services. Along with the development and implementation of ethics policies and guidelines for patient care through work on hospital ethics committees, clinical ethicists are increasingly involved in the ethics of healthcare organizational structures and processes and the day to day provision of ethics consultative services to health professionals, patients, and families.

In Jane Austen's Mansfield Park (1814), Fanny, an 18-year-old orphan who lives with her aunt Lady Bertram, received an attractive offer of marriage, which she vehemently rejected and is not prepared to reconsider.

Edmund Pellegrino noted that contemporary medicine is to a large extent a North American product, and so too is the ethics that accompanies it. This was an accurate observation back in the 1980s when he said it. Even today bioethics is to a considerable extent informed by the seminal works of the Anglo-American model, at least seen from the United States. The dissemination of ideas from the Spanish-speaking world has been nearly invisible to the English-speaking world of bioethics, isolated by language and culture from intellectual currents abroad.

I would like to share some reflections on how bioethics fosters dialogue between the sciences and humanities by talking a bit about my work as a physician-ethicist collaborating with neuroscientists studying severe brain injury and mechanisms of recovery. If I am successful in this Pilgrim's Progress, I hope I will convince you that the injured brain can teach us much about ourselves. It is not something I was prepared to believe as a medical student, when I was more certain of things than I am now.

In a practice like ethics consultation, quality and accountability are intertwined. Critics of ethics consultation have complained that clinical ethics consultants exercise power or influence in patient care without sufficient external oversight. Without oversight or external accountability, ethics consultation is seen as more sophistical than philosophical. Although there has been more discussion of accountability, concern for quality in ethics consultation is arguably more important, because it represents a central challenge for the field, namely, how to structure a responsible practice of ethics consultation.

Imagine you are walking down a city street. It is windy and raining. Amidst the bustle you see a young woman. She sits under a railway bridge, hardly protected from the rain and holds a woolen hat containing a small number of coins. You can see that she trembles from the cold. Or imagine seeing an old woman walking in the street at dusk, clutching her bag with one hand and a walking stick with the other. A group of male youths walk behind her without overtaking, drunk and in the mood for mischief. It doesn't need an academic to say what vulnerability is. We can all see it, much more often than we care to.

The birth of bioethics in Spain—and the rest of Europe—has not necessarily been a replication of what happened in North America, despite the arguments made by a number of mainstream American authors. From a European perspective, this thesis looks incomplete at best, if not entirely erroneous. Let us see why.

It might come as a surprise to many that Spain, a country with a strong Catholic tradition that officially banned contraceptive technologies until 1978, has some of the most liberal regulations in assisted reproduction in the world. Law No. 35/1988 was one of the first and most detailed acts of legislation undertaken on the subject of assisted-conception procedures. Indeed, not only did the law permit research on nonviable embryos, it made assisted reproductive technologies available to any woman, whether married or not, through the national healthcare system.

Prematurely born children who have underdeveloped lungs may suffer a potentially fatal condition called respiratory distress syndrome. A U.S. company developed a drug, called Surfaxin, to treat such poorly functioning lungs. A placebo-controlled study was planned in four Latin American countries (Mexico, Ecuador, Bolivia, and Peru). At the time, in 2001, four treatments were already on the market, although not available to the research populations used in the study. This case is usually discussed as part of the standard of care debate or offered as an example of exploitation. However, what concerns us in this case is rather the choice given to the parents of a prematurely born child under these circumstances: “You can give consent for your child's participation in this study. Half of the babies enrolled will receive sham air and are as likely to die as if they had not enrolled. The other half will receive an active treatment and are more likely to survive.” The parents can vastly increase their baby's chances of survival by participating in the study. Can the consent be voluntary? Do the parents have any meaningful choice?

Clinical ethics consultation (CEC) not only interprets moral issues at the bedside and is not restricted to giving support for the “technical” handling of these moral issues, but it has to substantively address moral values, norms, and conflicts in the process of discussing cases and problems. We call this the normative dimension and use normative in the sense of embracing moral values and convictions of persons and groups, norms, and relevant professional and ethical guidelines as well as legal frameworks. The roles and activities of the consultant as a person and the quality of CEC as a process are discussed in the American Society of Bioethics and Humanities’ (ASBH) Core Competences for Healthcare Ethics Consultation.

Discussions of appeals to conscience by healthcare professionals typically focus on situations in which they object to providing a legal and professionally permitted service, such as abortion, sterilization, prescribing or dispensing emergency contraception, and organ retrieval pursuant to donation after cardiac death. “Negative claims of conscience” will designate such appeals to conscience. When healthcare professionals advance a negative claim of conscience, they do so to secure an exemption from ethical, professional, institutional, and/or legal obligations or requirements to provide a healthcare service.

Vulnerable populations have been defined as those who face a significant probability of incurring an identifiable harm while substantially lacking ability and/or means to protect themselves. Vulnerabilities within population groups can be differentiated by factors that determine the different probabilities of incurring identifiable harms (risks) people face and the means available to them to protect themselves (their protective capacity). Among these factors is gender.

Over the past decade, clinical ethics has received growing attention in Germany as in most European countries. In the mid-1990s, most European countries made efforts to establish healthcare ethics committees (HEC) and clinical ethics consultation (CEC) services. The development of clinical ethics discourse and activities in Germany, however, was delayed and, consequently, is still in its natal phase. Until the end of the 1990s, the only institutionalized bodies of ethical reflection were the research ethics committees at university medical centers and at the State Physician Chambers. In March 1997, the Catholic and Protestant hospital association in Germany recommended the implementation of HECs, modeled after the American HECs. Consequently, the establishment of clinical ethics consultation in the form of HECs started in Germany in denominational hospitals, followed by a small but increasing number of community hospitals.

A 68-year-old patient who suffered from gastric cancer diagnosed 8 months earlier presented with multiple peritoneal and hepatic metastasis, despite several rounds of chemo- and radiotherapy. After admission to hospital, his general condition quickly became severely compromised. He was nearly emaciated, despite being on partial parenteral feeding. Four years earlier, due to a cardiac arrhythmia that was refractory to medication, the patient had a cardiac pacemaker (CPM) implanted, regulated to go off at frequencies of below 70 beats per minute. Given the patient's terminal situation, the team started developing some doubts about the pacemaker's effects during his dying process. The patient had mentioned his intention to donate his pacemaker after his death, but had not asked for its deactivation. The specialists were not sure about the effect of the pacemaker in unnecessarily prolonging the patient's final hour. Nevertheless, they opposed deactivation, which they considered ethically uncertain. The family, who had been initially for the deactivation, decided against it. The patient's condition was progressively deteriorating, as he was falling into a state of sopor and, later, into a coma.

In a provocative 1991 paper, Alvin Moss and Mark Siegler argued that it may be fair to give individuals with alcohol-related end-stage liver disease (ARESLD) lower priority for a liver transplant than those who develop end-stage liver disease (ESLD) from other factors. Like other organs, there is a substantial gap between the available livers for transplantation and the number of people who need liver transplants. Yet, unlike those with end-stage renal disease, who can survive for some time on dialysis before receiving a kidney transplant, those with liver failure will die without a liver transplant.