This chapter contains sections titled: Professional Issues Educational Issues Policy Issues Leadership Issues Specific Issues References.

Health care in France falls almost exclusively under theresponsibility of the Social Security department, which coversalmost all the expenditures related to health care,whether hospitalization or medication is concerned.For severe diseases or surgery the coverage is likelyto reach as much as 100%. The medical expendituresfor several severe diseases, such as cancer, myocardialinfarction, or neurodegenerative diseases are 100% coveredfor a period of time as long as three months. For some procedures, full coverage may be achieved by (...) usinga subscription to private health care insurance.Access to cover by the state has recently been openedto anyone living in France, after passage of a special law. There is still a lack of intensive care and hospice beds, given the rapidly increasing number of elderly who cannot be maintainedat home. There is a tendency to reduce the number ofbeds in private and public hospitals due to thegreat number of such institutions and the generalconcern that a low volume of procedures, associatedwith inexperienced health care professionals, is likelyto increase morbidity and mortality as well as publichealth care expenditure. Patients are still free tochoose doctors and hospitals (whether privateor public), provided that beds are available and thatspecific procedures can be carried out in thevicinity. So far no waiting list is needed, exceptfor specific procedures performed by a few specialists of high repute. Health care expenses are increasingcontinuously, which results in a very expensive systemin France. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Care of the terminal patient:Are we on the same page?Lauren WancataIn surgical training a “service” or care team consists of sick patients admitted to the hospital and the medical team caring for the patient. Each service consists of an attending physician, a chief resident, a senior resident and junior residents structured as a hierarchy. The chief was gone for the week. As a senior trainee I would (...) be the acting chief—a role I had assumed many times before this month. To prepare for the week of his absence, I read through each patient’s chart, and the chief and I discussed each patient—diagnosis, procedures, and plans.One was a 41–year–old male with cancer—he was young, but a patient like him was not uncommon at my institution. He originally came in through the emergency department with abdominal pain and difficulty with urination. His admitting medical team started the work–up for his symptoms—blood tests, a CAT scan, and consults to other physician services with specialized knowledge. He eventually underwent endoscopy with biopsies of his stomach and placement of stents into his ureter and kidney for his urinary issues. With return of the biopsies, he had a diagnosis—cancer. He required additional procedures, including the placement of stents into his bile ducts, as they, like his ureter, had become affected by the cancer. The next step was staging the cancer to determine his treatment options. Our surgical service was consulted for a diagnostic laparoscopy with washing—we would take a look inside his abdomen with a camera and obtain a fluid sample to be sent to the pathologist for review, the standard of care for this type of cancer. When the camera was placed nodules were seen—a sample of the nodules and the fluid were sent to a pathologist and determined to be positive for cancer: metastatic disease, stage IV. A special feeding tube was placed into his small intestine to aid in nutritional support, as he had already lost a significant amount of weight, and improving his nutrition would be imperative for any further treatments. Following this operation, oversight of his day–to–day care was taken on by our surgical service, and he had been under our care for a period of time before I rotated onto the service for the month.What was the plan for his care in the hospital, and what was his–long–term plan? His cancer could not be surgically removed due to the extent of its spread within his body. He had recently undergone another CAT scan due to an elevation in his white blood cell count (this elevation was a sign of possible infection) and a thoracentesis, a procedure to remove some of the fluid that was collecting around his lungs. Nephrologists (kidney specialist) had been consulted due to his declining kidney function. Throughout the days, his tube feeds, his source of nutrition, would often be turned off due to bloating and feeling full.Each morning, I rounded with our team, and we would see how he was doing. We would discuss how his night went, and make a plan for the day. He was a man of few words, but his wife was always at his bedside, to support him, listen to updates and keep tract of his progress. She had worked at the hospital and had seen a wide range of patients. She would ask about his kidney function, his tube feeds, and his labs. But, she never asked about his prognosis. I would leave his room each day with the unnerving feeling that the patient, family members and care team were not on the same page. Yes, we all wanted him to get better and to leave the hospital. [End Page 28] But, was he really going to get better? What defined better? Did the patient and his family really know the extent of his disease and his prognosis?Towards the end of my week as chief, I started to ask if they had any other questions. It had been a few weeks since his operation. Was there anything that they wanted to discuss or ask me about? At the... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:You Can't Say "No" to That!(A "Difficult Patient" Story)Ingrid BergAs a sequela of COVID-19, my rural Wisconsin hospital has been jam-packed for months with patients for whom we routinely provide care and many for whom we do not. An exodus of health care workers and other constraints have made the transfer of critically ill patients very difficult. In this disquieting "new-normal" of our work life, we routinely (...) must call bigger cities throughout our state to find beds for complex patients.So, it was not surprising when a young patient, an IV drug user in sepsis from a heart infection, was admitted to me in the middle of the night. In less disheartening times, before the pandemic, this patient would have been transferred promptly to the big-city hospital. Now, though, the possibility of finding an open bed is next to impossible. Resigned, I placed admission orders, continued antibiotics and fluids, and crossed my fingers. Then the unexpected happened: a bed opened up, and we could send her at once!The patient had a harsh heart murmur. It was likely that a "vegetation" was clinging to the valve, between the right upper and lower chambers of her heart. A vegetation is a clump of debris, such as platelets, clotting proteins, and bacteria that is a menace to the body. Her chest imaging looked like her infection had already spread to her lungs.A definitive diagnosis for endocarditis requires a special ultrasound with a probe that goes down through the esophagus, a procedure performed by cardiologists. It's a serious infection, one that requires weeks of IV antibiotics and is best monitored by infectious disease specialists. Sometimes, cardiothoracic surgeons are called upon to strip away the infection at the site, depending on how badly the valve has been slayed or the size of the vegetation. My only recommendation for a young, otherwise healthy patient in this scenario, is transfer.All of these reasons for transfer were lolling around in my tired head when the night-time [End Page 14] nursing supervisor approached me and said, "We have a problem." When the patient was updated about the transfer, she balked: "She says she is tired and refusing to go," the supervisor began. "She doesn't feel like getting into an ambulance in the middle of the night and she doesn't care if her condition is life-threatening. She knows we can't force her to go and she will only talk about it again in the morning."The cartoon version of myself at that moment had bugged-out eyes, a dropped jaw, fists tight and clenched at my sides, and steam coming out of my head. I can look past a patient's self-neglect, poor medication adherence, abysmal communication, alcohol and drug addiction, and other crimes. But saying no to a bed at a tertiary care facility? Unacceptable!I marched down the quiet hallway and into her room. She was lying on her side, facing the door, one IV in a thin arm. I was confident I could reason with her once I explained the scarcity of beds and the medical necessity of transfer. But she was having none of it. I was calm until I could no longer maintain my cool: "You can't give up this bed!""Maybe in the morning," she insisted, yawning. "But not now. I am tired and want to rest!""But there might not be a bed in the morning," I countered. "And your infection can be life-threatening." (This is true, but we both knew she wasn't dying at this very moment.)"I am not going anywhere!" She raised her voice and then closed her eyes.And she was right. I had no choice but to keep her. I could not kick her out of the hospital because she was making a poor choice, and I was frustrated for having to manage the fallout of that decision. Giving her antibiotics and fluid boluses to bolster her blood pressure was certainly within my scope of practice. And fretting. Fretting is always within my scope of practice; not that my scope of practice matters when all the big... (shrink)

BackgroundPatient-centred care and patient autonomy is one of the key factors to better quality of service provision, hence patient outcomes. It enables the development of patients’ trusts which is an important element to a better doctor-patient relationship. Given the increasing number of patient disputes and conflicts between patients and doctors in Chinese public hospital, it is timely to ensure patient-centred care is fully and successfully implemented. However, limited studies have examined the views and practice in different aspects of (...) patient-centred care among doctors in the Chinese public hospitals.MethodsA quantitative approach was adopted by distributing paper-based questionnaires to doctors and patients in two hospitals (Level III and Level II) in Jinan, Shandong province, China.ResultsIn total, 614 doctors from the surgical and internal medicine units of the two hospitals participated in the survey yielding 90% response rates. The study confirmed the inconsistent views among doctors in terms of their perception and practice in various aspects patient-centred care and patient autonomy regardless of the hospital where they work (category II or category III), their unit speciality (surgical or non-surgical), their gender or seniority. The high proportion of doctors (more than 20%) who did not perceive the importance of patient consultation prior to determining diagnostic and treatment procedure is alarming. This in in part due to the belief held by more than half of the doctors that patients were unable to make rational decisions and their involvement in treatment planning process did not necessarily lead to better treatment outcomes.ConclusionThe study calls for the development of system level policy and organisation wide strategies in encouraging and enabling the practice of patient-centred care and patient autonomy with the purposes of improving the quality of the service provided to patients by Chinese hospitals. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Stories of Families with Chronically Ill Pediatric Patients during the War in UkraineVita VoloshchukFebruary 24th was a day that has left a mark in the memory and on the lives of every Ukrainian person. My husband and I work together [End Page E5] in a hospital. He had gone into work early to conduct a kidney transplant that had been scheduled for that day. Suddenly, whilst on my way (...) to work that morning, I heard a strange sound—it was an air-raid siren. Before that, I had never heard such a sound. I went through all the possible options of what it could be. Of course, watching the morning news had never been a habit either. The next thing that astonished me was that the taxi I had ordered was taking an unnaturally long time to turn up. When I got into the taxi, I noticed that the taxi driver was really upset and silent for half of the journey. He then said, “A war has begun...”“War? So? The war has been going on since 2014.”“You don’t understand,” he said. “Russia is launching missile attacks all over the territory of Ukraine; Russian troops are coming from the east and north of Ukraine. They want to capture the capital of Ukraine.” (Kyiv).Arriving at the hospital, I saw confused faces everywhere. The morning meeting began with a discussion of how we were to act in any possible situation that may occur. We were to discharge patients from the hospital, as many as possible. The arrangement of a bomb shelter began (although I didn’t even think that such a thing existed in our hospital), along with the strengthening of the hospital’s windows, and the increase of supplies such as medicine and food. Of course, the boy who expected a kidney transplant did not receive it because no one knew what to expect at any second or where a hostile Russian missile might hit, as Russian missiles hit not only military objects but residential buildings, hospitals, and memorials as well.Children who had to continue therapy remained in the hospital. As soon as we heard the sound of an air-raid siren, we had to go down into the bomb shelter. This happened 5-10 times per day. Families with palliative and chronically ill children began to call and ask for advice on how to proceed in such a situation. As many children were on artificial respiration devices, others needed oxygen therapy, and sputum of mucus from the upper respiratory tract. All this required uninterrupted power supplies and appropriate equipment. Later that day, a doctor from Poland called me and asked if our pediatric patients needed help, saying it would be better if they were moved to Poland, where they would be safer and have the correct equipment. We started organizing evacuations for chronically ill and palliative patients.Seven days after the war began, parents from other regions, where the situation was more dangerous, began calling, asking for help evacuating. The hospital began to work intensively round the clock. Some patients moved in, and others were evacuated abroad. Some did not want to go. They continued treatment in the hospital, which turned into a hub for patients who had come from more dangerous, occupied territories; patients who were forced to leave their motherland to continue treatment.Since the beginning of the war, I have been responsible for transferring palliative patients and other patients with gastrointestinal diseases abroad. After the massive invasion, everything changed in our country. It is important to say that during the war, Lviv is safer than any other Ukrainian city, still air-raid sirens often go off, and everyone needs to run immediately to shelters for their safety. Palliative patients need special care. It is very difficult to run with patients several times per day during an air-raid siren or live with these children for a long time (2-3 weeks) in shelters because of the explosions occurring around them.It is impossible to move some patients to safety because they need appropriate medical equipment or mechanical ventilation is necessary. In shelters, there are crowds, and the high risk of... (shrink)

Definition of the problemStaff and patients in institutions of organized health care experience and express a variety of adverse conditions of these organizations. Within a theoretical framework of institutional pathology we can explain some of these “miserable conditions” as effects of the activities of organizations belonging to the political system (health policy) and to the economic system (health economy). Clinical ethics committees (CECs) cannot effectively handle such adversities or even address them properly. Standard organizational ethics can address them but (...) cannot handle them effectively.ArgumentsI propose to strengthen organizational ethics by a theory of institutional pathology. Basic nosological distinctions such as disease, illness and sickness, whose primary reference is to biological organisms and persons, can be analogically extended to socially constituted entities (e.g. hospitals) in terms of functional deficiency, miserable conditions, and need for reform of such entities. A very promising focus for analysis are organizational disorders of responsibility allocation. This group of institutional pathological disorders engenders, amongst other kinds of miserable conditions, specifically morally relevant miserable conditions.ConclusionThe institutional pathology paradigm, oriented to concrete institutions and organizations, can help “clinical” organizational ethics to considerably expand, in theoretical ethics as well as in ethically guided practice e.g. for members of CECs and organizational ethics advisors, the capacities for observing, evaluating and, if necessary, amending disturbed relations of responsibility. (shrink)

As human beings we sometimes in one way or another become sick, and therefore go for treatment depending on our choice of treatment (religious perspective or Western medical treatment). Although African traditional religion is not against a Western medical way of treatment or healing process, its followers believe that there are some diseases that Western medicine cannot treat, and therefore need spiritual attention, as it is sometimes practiced in churches. This article discusses the African traditional view regarding disease, causes (...) of disease, how disease is diagnosed and treated, with a special focus on Ghana. The article also describes the role of the diviner or the African traditional priest or what others may term as ‘herbalists’. The advantages and disadvantages of the African traditional healing process are considered. The article concludes by discussing African traditional healing in the context of a contemporary health care discourse, as well as a proposal for dialogue between traditional healers, Western medical practitioners, the government of Ghana, and the governments of various countries where this issue may be applicable, to build a consensus in addressing health issues. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Bringing Cancer Care to Those who Don't Have ItLawrence N. ShulmanI have been treating cancer patients in the Harvard Medical School hospitals since 1977, and in those 35 years we have made tremendous progress. Though work still needs to be done, and far too many patients still die of cancer, many are cured. In particular, children and young adults have a high rate of cure from such (...) diseases as Hodgkin's lymphoma, non-Hodgkin's lymphoma, acute lymphoblastic leukemia, and childhood sarcoma. Patients with breast cancer in the US have a greater than 80% chance for long-term survival. The death rate from cervical cancer in the US is very low. These results have been achieved by making diagnoses earlier, in many cases surgical excision, and often systemic therapies such as chemotherapy, hormonal therapy, radiation therapy, and more recently by using so-called "targeted" therapies—those directed at particular molecular characteristics of the cancer cells.Princess Dina Mired has said that the opportunity to survive cancer should not be an accident of geography. In cases where we already have effective and inexpensive tools to cure cancer, these treatments should be considered a basic human right, a life-saving medical service.I met Patty, a young woman living in the U.S. during November of her senior year in high school, after she discovered a small lump above her left collar bone. Though she felt entirely well, she called her primary care doctor who saw her the next day, felt the enlarged lymph node, and referred her to a surgeon, who did a biopsy later that week. Her primary care doctor also called me, and we scheduled a visit when the pathology results were available. The following week the pathologist notified Patty's pediatrician that the biopsy showed Hodgkin's lymphoma. When I met Patty, she was a bright and focused young woman, waiting to hear about her college applications and enjoying her senior year. Her cancer diagnosis was completely out of context with her life as she planned it, but with the support of her family and boyfriend, she seemed prepared to take things one step at a time. A PET CT scan demonstrated a modest mass in the mediastinum (chest), but no other disease. She was in an early stage of the disease with an excellent prognosis. We recommended and administered six months of chemotherapy with doxorubicin, bleomycin, vinblastine, and dacarbazine—four chemotherapy agents that are off-patent, and relatively inexpensive. She lost her hair, not a trivial issue for her, but otherwise felt reasonably well during the treatment. She was determined to graduate with her classmates, and was able continue to attend school and keep up with her work. In June, seven months into her cancer diagnosis and treatment, she graduated with honors, and was on track to enroll in college in September.Like other 18-year-old women with Hodgkin's lymphoma, Patty had an over 80% chance for cure with the potential for a long and productive life ahead of her because we could perform a biopsy, make a diagnosis, and safely and effectively treat her with four inexpensive, off-patent, chemotherapy drugs. She had nearly the same likelihood of living a long and fruitful life as her classmates, and had the same chances for childbearing. In my line of work, with the knowledge we now possess, to allow someone like Patty to die without a chance of curative care is simply unacceptable. Treatment of curable cancers should be considered on par with the right to clean water, adequate nutrition, treatment for infectious disease, and access to maternal and child healthcare services.But in many places in the world, people with cancers we could easily eradicate in Boston have no access to cancer services, and do die unnecessarily. The local healthcare infrastructure has no [End Page E10] capacity to evaluate a patient, perform or process a biopsy, make a diagnosis, or treat the patient with potentially curative surgery, chemotherapy and radiation. I have rounded on the wards of hospitals in developing countries, stopping to talk with numerous patients like Patty: young women, some of whom might have had Hodgkin's lymphoma, but no... (shrink)

The book reconstructs the history of Western ethics. The approach chosen focuses the endless dialectic of moral codes, or different kinds of ethos, moral doctrines that are preached in order to bring about a reform of existing ethos, and ethical theories that have taken shape in the context of controversies about the ethos and moral doctrines as means of justifying or reforming moral doctrines. Such dialectic is what is meant here by the phrase ‘moral traditions’, taken as a name for (...) threads of moral discourse, made in turn of other interwoven threads, including transmission of shared codes, appeals to reform of prevailing custom, rational argument about the justification of some precept on the basis of some shared general teaching or principle, and rational argument about the ultimate basis for principles and justification of authoritative teaching. That is, the approach adopted to the reading of ethical texts depends on a firm belief in the fact that philosophers hardly created any ethical doctrine out of nothing. The main point this book tries to highlight is how different philosophical theories emerged and followed each other as a result of attempts at accounting for what was going on in the world of moral traditions. Changes were propelled by controversies between different schools, and highly abstract arguments were the unintended effects of moves made by controversialists forced to transform (and occasionally to turn upside down) their own doctrines in order to face the challenge posed by other arguments. This is the reason why the book examines not only texts that already enjoy pride of place in the history of philosophy (Aristotle, Kant, Hegel), but also other texts usually treated in the histories of religions (the Bible, the Talmud, the Quran), and others considered to be much less philosophical (Plutarchus, Pufendorf). -/- 1. Plato and a response to ethical scepticism. Two different traditions of morality in VI-V century Greece are described. The birth of philosophical questioning of traditional morality and temporal and spatial variation of custom is described within the context of the v century crisis, the demise of traditional aristocratic and tyrannical rule and the birth of democracy. Two conflicting answers to the challenge are reconstructed, namely conventionalist or immoralist theories formulated by the Sophists and the eudemonist and intellectualist Socratic theory. Plato’s own reformulation of Socrates answer to the Sophists is reconstructed. His psychological views, his classification of the four cardinal virtues and his political theory are described as parts of a unitary system, culminating in an extremely realist moral ontology identifying the idea of the good with the essence of the (moral and extra-moral) world itself. -/- 2. Aristotle and the invention of practical philosophy. Aristotle’s invention of practical philosophy as a field separated from first philosophy is shown to be an implication of his break with Plato moral ultra-realism. Aristotle’s agenda in his moral works is arguably dependent on a polemical intention, namely dismantling Socratic intellectualism. The semi-inductive or virtuously circular method of practical philosophy is illustrated, starting with the received opinions of the better and wiser individuals and trying dialectically to sift what is left of mistake and inconsistence in such opinions, finally trying to correct mistakes and make the overall practical science more consistent. The chapter illustrates then the relationship of individual ethics, or ‘monastics’, with the art and the science of the pater familias, or ‘economics’, and the science of the ruler and citizen, or politics. The nature of virtues, or better, excellences of character, is discussed, highlighting the basic role of hexis, or ‘disposition’. Prudence, or better practical wisdom, is the focus of the chapter. Its relationship with bouleusis or deliberation is examined, and its autonomous status vis-à-vis theoretical knowledge is stressed. -/- 3. Diogenes and philosophy as a way of life. The chapter provides an overview of Hellenistic ethics, which almost amounts to Hellenistic schools of philosophy, in so far as ‘philosophy’ became in these centuries primarily the name for a way of life. The typical character of the Cynical movement is highlighted, that of a school of life, not a school aimed at providing any kind of intellectual training was to be provided. -/- 4. Epicurus and ethics as self-care. The peculiar character of the Epicurean school is described, a combination of a science of well-being aiming, more than at pleasure as in the popular view, at reduction of useless suffering, of unnecessary needs, and at a balanced selection of pleasures of the best and most durable kind. -/- 5. Epictetus and ethics as therapy of the passions. The various phases of Stoicism are described, and the shifting place given to ethics in the Stoic system of idea, culminating in the paradoxical view of ethics, its impossibility in principle notwithstanding, as the only truly significant and necessary part of philosophy. Cicero is treated, showing how his own synthesis of various Hellenistic trends is as a truly philosophical enterprise, deserving serious consideration after one or two centuries when he was confined to the role of literate. Epictetus is chosen as the best example of what the Stoic tradition could yield, an art of living based on sophisticated introspection, in turn aimed at making a kind of cognitive therapy possible, dismantling obnoxious passions at their root by systematically correcting false representations. -/- 6. Philo and the reconciliation of Torah and Platonism. A reconstruction of basic ideas from a few books of the Hebrew Bible is provided, starting with the Prophetic tradition and the focus on God’s mercy as the source of motivation and standard for human behaviour. Then a comparative analysis is undertaken of a parallel tradition, namely the three codifications of the Torā (Law or, better, Instruction), highlighting how a core of moral ideas may be recognized as a basis and preamble of codification of civil law, cultural practice, and regulation of ritual purity. The importance of Leviticus is stressed as the turning point when emphasis mercy, typical of the Prophetic tradition, is combined with the legal tradition, yielding the change in sensibility of the Second Temple time. Philo of Alexandria is described as one of the three leading figures – together with Rabbi Hillel and Rabbi Yeshua – at the apex the emergence of the mentioned new sensibility, gradually including mercy as an essential part of justice and establishing the starting point of both the Rabbinic and the Christian tradition. This consists precisely in the precept of one’s neighbour’s love or of the golden rule, two eventually identical precepts whose meaning is arguably more sober and sensible than the long-lasting Christian tradition deriving from John and Augustine has made us believe and no novelty vis-à-vis so-called Ancient-Testament teachings. -/- 7. Augustine and Christianity as Neo-Platonism. The first section examines the moral doctrines of so-called 'ethical Treaties' from the Talmud, a group of treaties, among which the best known is Pirqé Avot, that were left out of the six "orders" of the canon as they did not fit in any of the six groups of issues ritual or legal on which the division was based. According to Maimonides, their peculiar theme is provided by the Deòt, 'opinions', i.e., mental dispositions, that is, the translation of the Greek term hexeis and Arab akhlak (in turn providing in this language the name for ethics as such). The three topics I reconstruct are: i) the notion of Torah: The Torah is understood as the world order itself, or as the ‘Wisdom’ that existed even before creation and was ‘the tool by which the world was built’; however, the Torah is an earthly and human entity, as it was "received" by humans, and from that very moment belongs to them; ii) the relationship between love of God and love of neighbour; the treaties require us to study and practice the Torah ‘for its own sake’, that is, require us to act out of love, not out of fear or hope of reward; iii) the idea of sanctification of daily life: having disappeared with the destruction of the Temple the possibility of any conflict between liturgical service and everyday life, the latter is assumed to be in itself divine service: to give food to the poor has the same value as sacrifices in the Temple, and as an implication, the insistence become recurrent on the goodness of created things in themselves along with a polemic against ascetic currents. The conclusions drawn are: i) the moral teachings of the Talmud and those of Yeshua are, rather than similar, virtually identical; one may safely say that the precept of love and the golden rule are central ones for all Talmudic rabbis, that mercy plays an indispensable role alongside with justice, and the latter is not a different thing from one’s neighbour’s love; ii) a peculiarity of Talmud rabbis facing Yeshua is the idea of study as worship, and knowledge as a source of justice; but this is an idea of Judaism after the Temple's destruction that cannot be attributed to the Pharisees of Yeshua’s time; iii) the relation of study and practice in the Talmud parallels that between faith and deeds in Paul's epistles, that is, respectively faith or learning are a necessary and sufficient condition to be recognized as righteous , but deeds are the inevitable effect of either faith or learning. The sayings ascribed to Yeshua are examined first, yielding the conclusion that a close equivalent may be found for every saying in Talmudic literature and yet the whole is ascribed to one rabbi, with rather consistent stress on God’s mercy and unconditional forgiving as the mark of true imitation of God. Thus, Yeshua’s teaching is pure Judaism. The third section describes briefly the galaxy of Gnostic currents and Manichaeism, trying to sketch the profile of moral teachings resulting from an encounter of Asian spiritual traditions, Hellenistic lore and sparks of teachings from apocalyptic Jewish currents. The last section summarizes the turbulent history of several encounters between Christian currents and Hellenistic philosophical schools. The first one was with late Cynicism. Recent, rather controversial, literature discovered the jargon and a few topics from the Stoic-Cynical popular philosophy in a few books from the New Testament itself. This, far from proving that Rabbi Yeshua had been influenced by cynic preachers, is a proof of the necessity felt by Christian preachers to translate the original ‘Christian’ teaching into a Greek lexicon deeply impregnated with cynic terminology. The second was with Platonism, yielding the mild and temperate moral teaching of Clemens of Alexandria, teaching the sanctity of nature and the human body, the joy of moderate fruition of ‘natural’ kinds of pleasures, and the beauty of the marital life – in short, the opposite of the standard picture of Medieval Christianity. Ambrose of Milan brings about a different kind of synthesis, namely with Middle Platonism, where Stoic themes prevail. The most shocking case is Augustine, where an early Manichean education is overcome in a former phase by a synthesis of Plotinian Neo-Platonism and Christian preaching, yielding a sustained polemic with the Manicheans and rather optimistic views on life and Creation, the body and sexuality, and Hebrew-Judaic tradition not far from Clemens of Alexandria. In a later phase, occasioned by controversy on the opposite front, with such Christian currents as the Pelagians and Donatists, Augustine comes back to heavily anti-Judaic and world-denying ascetic attitudes where is earlier Manichean upbringing seems to emerge again. The tragedy of medieval Christianity will be the later Augustine’s overwhelming influence. A final section is dedicated to the monastic tradition where a curious mixture of world-denying asceticism with an astonishingly penetrating ‘science’ of introspection emerges. -/- 8. Al Farabi and the reconciliation of Islam and Platonism. The Qurān and the qadit, that is, collections of sayings ascribed to the prophet Muhammad contain a wealth of precepts and catalogues of virtues mirroring moral contents from the Jewish and the Christian traditions, among them the basic notion of imitation of the Deity, where mercy is assumed to be its basic trait. An important tradition within Islam, namely Sufism, stressed to the utmost degree the role of mercy, turning Islam into a mystic doctrine centred on retreat from the world, abandonment to God’s will, and a peaceful and fraternal attitude to our fellow-beings. A secular literary tradition originating in the Sassanid Empire, the literature of advice to the Prince had for a time a widespread influence in the newly constituted Arabic-Islamic commonwealth. In a later phase, the legacy of Hellenic philosophy made its way into the intellectual elite of the Islamic world. The first important legacy was Platonic, and the Republic became the main text for Islamic Platonism. Al-Farabi wrote an enjoyable remake of the Platonic Republic, arguing that the citizen’s virtues were the basis on which the political building needs to rest. The secular lawgiver is enlightened by the light of reason in his everyday practice of governance, but room is made for the Prophet as the voice of revealed truth that confirms and completes the rational truth that philosophy may afford. In a second phase also Aristotelian and Stoic influence were assimilated. Miskawayh’s treatise was the masterwork at the time Arabic philosophy reached its Zenith. It is a treatment of the soul’s diseases and their remedies, combining the Aristotelian doctrine of the golden mean with the Stoic doctrine of the passions and elements of Galenic medicine. Towards the eleventh-twelve centuries a war raged among theologians and philosophers, finally won by the former with disappearance of philosophy as such. The newly established mainstream, yet, was no kind of intolerant fanaticism. It drew from the work of mystic theologian Al-Ghazālī, the best heir of Sufism, teaching a tolerant and peaceful attitude to our fellow-beings and a passive attitude to destiny as an expression of the Divine will. -/- 9. Moshe ben Maimon and the reconciliation of Torah and Aristotelian ethics. The encounter between the Talmudic tradition and Hellenic philosophy had taken place a first time in Alexandria at the time of Philo but the two traditions had parted way again. In fact, the kind of Platonic Judaism founded by Philo survived only within Christianity, in the fourth Gospel and then in writings by Clemens of Alexandria. The Talmudic literature had absorbed just less striking traits from the Hellenic Philosophy, namely an idea of ethics as care of the self and a role for the education of character as propaedeutic to theoretical knowledge. In the Arabic-Islamic world, a second round started when Jewish authors writing in Arabic undertook the task to prove the full compatibility of the tradition deriving from Torah and Platonic philosophy. The culmination of this attempt is provided by Moshe ben Maimon who tried to use Aristotelian ethics as a language into which the teaching from the Pirké Avot could be translated. -/- 10. Thomas Aquinas and the reconciliation of Christian morality and Aristotelian ethics. In the first section the fresh start is described of philosophical ethics in Latin Europe at the turn of the Millennium. In a first phase, Anselm and Peter Abelard built on a Platonic and Augustinian legacy. In this phase. remarkable innovations are introduced, including Abelard’s claim of the obliging character of erring consciousness. In a second phase, the rediscovery of Nicomachean Ethics thanks to Latin translation of Arabic versions gives birth to a new wave of ethical studies, recovering the very idea of Aristotelian practical philosophy, with the potential implication of full legitimization of natural morality, i.e. ethics without Revelation. Aquinas’s ethics is a theological ethics out of which it would be vain to try to extract a self-contained philosophical ethics. His treatment of topics in philosophical ethics, yet, does not boil down to repetition of Aristotelian arguments but is rather a creative reshaping of such arguments. For example, he introduces also in the practical philosophy a first principle parallel to the principle of non-contradiction; and he also carries out a synthesis of Aristotelianism, Stoicism, and neo-Platonism. Even though it is essentially moral theology, Aquinas’s doctrine - unlike Augustine – grants full citizenship to "natural" morality, firstly by rejecting the claim that the corruption of human nature due to the original sin is so radical as to leave "pure nature" incapable of moral goodness. The doctrine is presented in a more sophisticated formulation in a few of the Quaestiones, such as De Malo and De Veritate, in the Summa contra Gentes and in the commentaries to Aristotle than in the famous Summa Theologica, but the latter work includes the only or the largest exposition of some decisive part of the theory. Thus, the Summa Theologica should be read for what it is more than criticized for not being what it was not meant to be. It was not meant to be the brilliant synthesis of all that Reason he had been able to produce with what Revelation had added about which the Neo-Thomists used to dream, but rather a manual for the training of preachers and confessors, where theoretical claims are not too demanding and a few serious tensions are left. Besides a jump between the Prima Secundae and the Secunda Secundae, being the former an essay in virtue theory and the latter a handbook for confessors, the most serious tension is perhaps the one between the ethics of right reason presented in most of Ia-IIae and the eudemonistic ethics developed in quaestiones 1-5 of the same part; the alternative ethical theory which also may be found in Augustine, the Stoic view of a cosmic reason eventually coincident with the moral law, was believed by Anselm (followed by John Duns Scotus and William of Ockham) to be incompatible with eudemonism. It is questionable whether Thomas could reduce the tension proving that it is just an apparent tension, in so far as the right reason and bliss derived from knowledge of God tend to coincide, but this is just a conjecture. Thomas’s ethics is a virtue ethic, not a law-based one, and moral judgment focuses on the virtues, particularly charity, not on the commandments and even less on absolute prohibitions; Thomas, however, would not have considered a drastic alternative between law and the virtues such as the one which has been advanced in late twentieth-century philosophy to be justified. Nonetheless, when it discusses ‘special’ virtues, it ceases to be an ethics of virtue and becomes a disappointing and often contradictory discussion of legal and illegal acts. Such a discussion takes most of the time ‘reasonable’ middle positions on controversial issues but not the alternative approach that Aristotelianism would have made possible; even when some occasional Aristotelian claim shows up, such as money’s barrenness as a reason against usury, this seems to be made by an author who apparently ignores the Aristotelian Thomas of the Prima Secundae. It is an ethic of human autonomy which recognizes the binding character of the individual conscience and, potentially, even a duty to disobey unjust laws. It is true that what Thomas writes in his discussion of death penalty and persecution of heretics is simply disgusting, and yet we should blame Thomas the man, not Thomist ethical theory. Finally, Thomas’s ethics is not ethical ‘absolutism’, as both traditionalist Catholic theologians and secularist enemies of dogmatic morality tend to believe. It is instead an ethic of prudential judgment. Exceptions to this approach – or better results of logical fallacies – are such claims as the absolute character of negative precepts and of the existence of "intrinsically evil acts", claims that simply cease to make sense in the light of Thomas’s own distinction between human act and natural act, carrying consequences Thomas did not live long enough to draw or was not consistent enough to dare to draw. -/- 11. Francisco de Vitoria and casuistry. The first topic illustrated is the discussion about the notion of pura natura, namely the human condition after the original sin and before divine revelation. The core notion was already there in Aquinas but was later developed by Caietanus (Thomas de Vio) with a number of interesting implications: firstly a view of human nature as such much more positive than Augustine’s and his followers’ view, including both Calvinists and Jansenists; secondly, the implication that the philosopher’s morality, as opposed to the Christian’s morality, is a quite respectable kind of morality; thirdly, that theocracy and prosecution of the unfaithful lacked justification, with more far-fetching consequences than Aquinas himself had dared to draw. The second topic is casuistry, a new name for a comparatively older way of thinking, which was already there in late Stoicism and Cicero as well as in the Talmudic literature. This is an approach aimed at yielding probable enough solutions for doubtful cases even in absence of completely safe staring points. The genre developed from medieval reference books for confessors and became by the sixteenth-century a sophisticated tool-box for dealing with various fields of applied ethics. Francisco Vitoria, the main authority of Baroque Scholasticism, was a controversial figure, among the proponents of the new discipline of casuistry and a consistent proponent of more separation between the religious and the civil authority, stricter limits to the legitimacy of war, innate rights of non-Christian nations in the New World based on the notion of pura natura, providing a standard of ‘natural’ goodness, previous to revelation, on which the Indian nations were judged to live in a naturally good condition, provided with the institutions of family, justice, and religion had accordingly a right to full respect by Christian sovereigns. Bartolomé de Las Casas, arguing along similar lines, was the leader of a historical battle in defence of the rights of the Indios. -/- 12. Michel de Montaigne and the art of living. A short description of one of the Renaissance Phyrronism, one of the classical philosophies revived in the fifteenth and sixteenth century. Montaigne combines the sceptical epistemology with an understanding of ethics – indeed of philosophy as a whole – in terms of an art of living inspired by two basic ideas, sagesse, that is, practical wisdom as the only kind of rationality available after theology, science, and tradition have declared bankrupt, and an aesthetic ideal of self-transformation through the art of writing and introspection. -/- 13. Pierre Nicole and neo-Augustinianism. The chapter illustrates first the vicissitudes of Augustinianism newly born after the late medieval triumph of Thomist Aristotelianism in the alternative Protestant and Catholic versions processed by the Calvinists and the Jansenists. Then it illustrates the doctrines of Pierre Nicole, Blaise Pascal’s best disciple, on the impossibility of introspection, on the ubiquity of self-deception, on the incurably evil character of the passion of love, and on the two moralities, the one of the man of the world, the morality of honesty which is indispensable for granting peace and order but devoid of any true value for eternal salvation, since the same external behaviour may be prompted by opposite motivations, and the morality of charity, the only true one but also useless to society. The third topic is Pierre Malebranche’s view of self-deception as a ubiquitous phenomenon accounting for human action and responsibility and his reformulated theory of self-love, no less ubiquitous than for Nicole and yet not as incurably evil, given the distinction between morally indifferent and even necessary amour de soi and vicious amour proper, a distinction on which the whole of Rousseau’s moral and political theory rests. -/- 14. Samuel von Pufendorf and the new science of morality. The chapter is dedicated to the discovery of the idea of a ‘new moral science’. Hugo Grotius is discussed first highlighting the real character of his project, much closer to the Thomist idea of a natural law accessible to non-corrupted human reason when human beings are living in a state of pura natura. Then Hobbes’s combination of scepticism, voluntarism, and conventionalism is described and both the continuity with Grotius’s new science, in the search for non-revealed rational morality, and the break with him, in the adoption of voluntarism and refusal of an intellectualist view of natural law, are illustrated. Pufendorf’s work is illustrated as a synthesis of the two previous attempts and the – up to Schneewind underestimated – paradigmatic example of the new science of morality. -/- 15. Richard Cumberland and consequentialist voluntarism. The chapter gives an overview of eighteenth-century Anglican ethics, noticing how the Cambridge tradition gave special weight to natural theology as opposed to positive or revealed theology – and how two Cambridge fellows, John Gay and Thomas Brown, elaborated on Cumberland’s (and Malebranche’s, as well as Leibniz’s) strategy for finding a third way between intellectualist view and voluntarist view of the laws of nature. The result of their elaboration was a kind of a rational-choice account of the origins of natural laws, where a law-giver God chooses among a number possible sets of laws on a maximizing criterion, and God’s maximandum is happiness for his creatures. The chapter notices also how such a solution aimed at solving at once the problem of evil and that of the foundation of moral obligation by proving how God’s choice was justified as far as it was the one minimising the amount of suffering in the world. 16. Richard Price and intuitionism. The chapter describes first the doctrines of the Cambridge Platonists, an example of hyper-rationalist reaction to Calvinism. Secondly it describes the sophisticated and universally ignored – from Sidgwick to Anscombe –version of what was later labelled ‘ethical intuitionism’ – showing how it escapes familiar objections and misrepresentations of intuitionism – from Mill to Rawls – in grounding its argument on transcendental arguments while carefully avoiding recourse to introspection and psychological evidence, which has been taken as a too easy target by critics of intuitionism. Thirdly, the chapter discusses Whewell’s ‘philosophy of morality’, as opposed to ‘systematic morality’, not unlike Kant’s distinction between a pure and an empirical moral philosophy. Whewell worked out a systematization of traditional normative ethics as a first step before its rational justification; he believed that the point in the philosophy of morality is justifying a few rational truths about the structure of morality such as to rule hedonism, eudemonism, and consequentialism; yet a system of positive morality cannot be derived solely from such rational truths but requires consideration of the ongoing dialectics between idea and fact in historically given moralities. Whewell’s intuitionism turns out closer to Kantian ethics than commentators have made us believe until now, and quite different from what Sidgwick meant by intuitionism. -/- 17. Adam Smith and the morality of role-switch. The chapter describes first, Hutcheson’s attempt at basing the ‘new science’ of natural law on different bedrock than Pufendorf and the English Platonists, namely a moral sense, a faculty whose existence is assumed to be proved on an empirical basis. The second step is a reconstruction of Hume’s rejoinder in terms of a new science of man including morality on an ‘experimental’ basis, that is, a ‘Newtonian’ hypothetical-deductive approach, distinguished from Hutcheson’s allegedly uncritical descriptive approach to human nature. The third step is a reconstruction of Adam Smith theory of morality understood as emerging from a spontaneous interplay of exchanges of situations (the most basic meaning of the word ‘sympathy’ as construed by this author). -/- 18. Jeremy Bentham and utilitarianism. The bulk of the chapter is dedicated to the doctrines of Jeremy Bentham. The Enlightenment spirit that suggested the idea of a new morality, free from religion, is illustrated. The notion of utility is illustrated as well as the subsequent formulations of the principle of utility. The idea of felicific calculus is discussed, showing how its inner difficulties prompted several reformulations of the principle of utility in order to avoid undesirable implications of proposed formulations. The role of the thesis of spontaneous convergence between interest and duty is discussed, showing how it left numberless questions open, and the distinction between the virtues of prudence, justice and beneficence is described as a way out of the deadlocks of classical utilitarianism. After Bentham, Mill’s reformed utilitarianism is reconstructed, showing how it is a kind of mixed system – as closer to common sense as it gives up Bentham’s claims to consistency and simplicity – resulting as unintended consequences from the controversies in which Mill was too keen to engage. The hidden agenda of the controversy between Utilitarianism and Intuitionism, going beyond the image of the battle between Prejudice and Reason, is described, showing how both competing philosophical outlooks turn out to be more research programs than self-contained doctrinal bodies, and such programs appear to be implemented, and indeed radically transformed while in progress thanks to their enemies no less than to their supporters. -/- 19. Immanuel Kant, practical reason and judgment. The chapter argues that Kant took from Moses Mendelssohn the idea of a distinction between geometry of morals and a practical ethic. He was drastically misunderstood by his followers precisely on this point. He had learned from the sceptics and the Jansenists the lesson that men are prompted to act by deceptive ends, and he was aware that human actions are also empirical phenomena, where laws like the laws of Nature may be detected. His practical ethics made room for judgment as a holistic procedure for assessing the saliency of relevant moral qualities in one given situation; this procedure yields the same results as the geometry of morals does for abstract cases but does so immediately and without balancing conflicting duties with each other, since what makes for the salient quality of a situation is perceived from the very beginning. Kant's practical philosophy is richer than the received image, making room for an ‘empirical moral philosophy’ or moral anthropology including treatment of commerce, needs, value and price, happiness and well-being; the overall social theory and philosophy of history is less different from Adam Smith's than the received image makes believe; the paradox of happiness is central to Kant's philosophy; a distinction between happiness and well-being is clearly drawn; the distinction plays a basic role in establishing a link between the economic and the moral life. -/- 20. Georg Wilhelm Friedrich Hegel and the critique of abstract universalism. The chapter describes first the Romantic movement and the implications some of its concerns, rescuing passions, community, tradition, the individual as the bearer of a unique destiny, and the longing for organic unity between the individual, mankind and nature. Hegel’s contribution is discussed then, highlighting how, on the one hand, he shared a number of these concerns and on the other he had more rationalist leanings. The notion of morality is the pivotal point of the reconstruction, highlighting how Hegel construes this notion as a key to his own diagnosis of the malaise of modernity – the separation of individual and Gemeinschaft – and how his attack on Kant turns around this very idea. -/- 21. Friedrich Nietzsche against Christianity and the Enlightenment. The chapter illustrates first the idea of deconstruction of the back-world of values. Nietzsche claims to be legitimate heir of the French moralists, Leibniz, Kant and Hegel, in so far as he allegedly carries out to its deepest implications their discovery of what lies behind traditional naïve belief in the existence of an objective realm of values just waiting for description by the philosopher. The two exemplars form which genealogy draws inspiration are the classical philologist’s historical reconstructions of lost meanings and the chemist’s decomposition of elements. Then the genealogy of the notions of good and evil carried out in the first dissertation of Genealogy of morals is illustrated with its paradoxical conclusion that will to power is in fact the only ‘genuine’ kind of goodness. The third point illustrated is the dialectic of ascetism and self-realization with its ambiguous outcome. The suggested interpretation of such outcome is that Nietzsche’s normative ethics is a kind of virtue ethics taking an aesthetic ideal as a normative standard -/- 22. George Edward Moore and ideal utilitarianism. The chapter discusses the ideas of common sense and common-sense morality in Sidgwick. I argue that, far from aiming at overcoming common-sense morality, Sidgwick aimed purposely at grounding a consist code of morality by methods allegedly taken from the natural sciences to reach, also in ethics, the same kind of “mature” knowledge as in the natural sciences. His whole polemics with intuitionism was vitiated by the a priori assumption that the widespread ethos of the educated part of humankind, not the theories of the intuitionist philosophers, was what was worth considering as the expression of intuitionist ethics. In spite of a naïve positivist starting-point, Sidgwick was encouraged by his own approach in exploring the fruitfulness of coherentist methods for normative ethics. Thus, Sidgwick left an ambivalent legacy to twentieth-century ethics: the dogmatic idea of a “new” morality of a consequentialist kind, and the fruitful idea that we can argue rationally in normative ethics albeit without shared foundations. Then it reconstructs the background of ideas, concerns and intentions out of which Moore’s early essays, the preliminary version, and then the final version of Principia Ethica originated. I stress the role of religious concerns, as well as that of the Idealist legacy. I argue that PE is more a patchwork of rather diverging contributions than a unitary work, not to say the paradigm of a new school in Ethics. I add a comparison with Rashdall’s almost contemporary ethical work, suggesting that the latter defends the same general claims in a different way, one that manages to pave decisive objections in a more plausible way. I end by suggesting that the emergence of Analytic Ethics was a more ambiguous phenomenon than the received view would make us believe, and that the wheat (or some other gluten-free grain) of this tradition, that is, what logic can do for philosophy, should be separated from the chaff, that is, the confused and mutually incompatible legacies of Utilitarianism and Idealism. -/- 23. Edmund Husserl and the a-priori of action. The chapter illustrates first the idea of phenomenology and the Husserl’s project of a phenomenological ethic as illustrated in his 1908-1914 lectures. The key idea is dismissing psychology and trying to ground a new science of the a priori of action, within which a more restricted field of inquiry will be the science of right actions. Then the chapter illustrates the criticism of modern moral philosophy carried out in the 1920 lectures, where the main target is naturalism, understood in the Kantian meaning of primacy of common sense. The third point illustrate is Adolph Reinach’s theory of social acts as a key the grounding of norms, a view that basically sketches the very ideas ‘discovered’ later by Clarence I. Lewis, John Searle, Karl-Otto Apel and Jürgen Habermas. A final section is dedicated to Nicolai Hartman, who always refused to define himself a phenomenologist and yet developed a more articulated and detailed theory of ‘values’ – with surprising affinities with George E. Moore - than philosophers such as Max Scheler who claimed to Husserl’s legitimate heirs. -/- 24. Bertrand Russell and non-cognitivism. The chapter reconstructs first the discussion after Moore. The naturalistic-fallacy argument was widely accepted but twisted to prove instead that the intuitive character of the definition of ‘good’, its non-cognitive meaning, in a first phase identified with ‘emotive’ meaning. Alfred Julius Ayer is indicated as a typical proponent of such non-cognitivist meta-ethics. More detailed discussion is dedicated to Bertrand Russell’s ethics, a more nuanced and sophisticated doctrine, arguing that non-cognitivism does not condemn morality to arbitrariness and that the project of a rational normative ethics is still possible, heading finally to the justification of a kind of non-hedonist utilitarianism. Stevenson’s theory, another moderate version of emotivism is discussed at some length, showing how the author comes close to the discovery of the role of a pragmatic dimension of language as a basis for ethical argument. Last of all, the discussion from the Forties about Hume’s law is described, mentioning Karl Popper’s argument and Richard Hare’s early non-cognitivist but non-emotivist doctrine named prescriptivism. -/- 25. Elizabeth Anscombe and the revival of virtue ethics. The chapter discusses the three theses defended by Anscombe in 'Modern Moral Philosophy'. I argue that: a) her answer to the question "why should I be moral?" requires a solution of the problem of theodicy, and ignores any attempts to save the moral point of view without recourse to divine retribution; b) her notion of divine law is an odd one more neo-Augustinian than Biblical or Scholastic; c) her image of Kantian ethics and intuitionism is the impoverished image manufactured by consequentialist opponents for polemical purposes and that she seems strangely accept it; d) the difficulty of identifying the "relevant descriptions" of acts is not an argument in favour of an ethics of virtue and against consequentialism or Kantian ethics, and indeed the role of judgment in the latter is a response to the difficulties raised by the case of judgment concerning future action. A short look at further developments in the neo-naturalist current is given trough a reconstruction of Philippa Foot’s and Peter Geach’s critiques to the naturalist-fallacy argument and Alasdair MacIntyre’s grand reconstruction of the origins and allegedly unavoidable failure of the Enlightenment project of an autonomous ethic. -/- 26. Richard Hare and neo-Utilitarianism. The chapter addresses the issue of the complex process of self-transformation Utilitarianism underwent after Sidgwick’s and Moore’s fatal criticism and the unexpected Phoenix-like process of rebirth of a doctrine definitely refuted. A glimpse at this uproarious process is given through two examples. The first is Roy Harrod Wittgensteinian transformation of Utilitarianism in pure normative ethics depurated from hedonism as well as from whatsoever theory of the good. This results in preference utilitarianism combined with a ‘Kantian’ version of rule utilitarianism. The second is Richard Hare’s two-level preference utilitarianism where act utilitarianism plays the function of eventual rational justification of moral judgments and rule-utilitarianism that of action-guiding practical device. -/- 27. Hans-Georg Gadamer and rehabilitation of practical philosophy. The post-war rediscovery of ethics by many German thinkers and its culmination in the Sixties in the movement named ‘Rehabilitation of practical philosophy’ is described. Among the actors of such rehabilitation there were a few of Heidegger’s most brilliant disciples, and Hans-Georg Gadamer is chosen as a paradigmatic example. His reading of Aristotle’s lesson I reconstructed, starting with Heidegger’s lesson but then subtly subverting its outcome thanks to the recovery of the central role of the notion of phronesis. -/- 28. Karl-Otto Apel and the revival of Kantian ethics. Parallel to the neo-Aristotelian trend, there was in the Rehabilitation of practical philosophy a Kantian current. This started, instead than the rehabilitation of prudence, with the discovery of the pragmatic dimension of language carried out by Charles Peirce and the Oxford linguistic philosophy. On this basis, Karl-Otto Apel singled out as the decisive proponent of the linguistic and Kantian turn in German-speaking ethics, worked out the performative-contradiction argument while claiming that this was able to provide a new rational and universal basis for normative ethics. An examination of his argument is some detail is offered, followed by a more cursory reconstruction of Jürgen Habermas’s elaboration on Apel’s theory. -/- 29. John Rawls and public ethics as applied ethics. Rawls’s distinction between a “political” and a “metaphysical” approach to one central part of ethical theory, namely the theory of justice, is interpreted as a formulation of the same basic idea at the root of both the principles approach and neo-casuistry, both discussed in the following chapter, namely that it is possible to reach an agreement concerning positive moral judgments even though the discussion is still open – and in Rawls’ view never will be close – on the basic criteria for judgment. -/- 30. Beauchamp and Childress and bioethics as applied ethics. The chapter presents the revolution of applied ethics while stressing its methodological novelty, exemplified primarily by Beauchamp and Childress principles approach and then by Jonsen and Toulmin’s new casuistry. -/- . (shrink)

PHOTO ID 121339257© Designer491| Dreamstime.com ABSTRACT When physicians use their clinical knowledge and skills to advance the well-being of their patients, there may be apparent conflict between patient autonomy and physician beneficence. We are skeptical that today’s medical ethics education adequately fosters future physicians’ commitment to beneficence, which is both rationally defensible and fundamentally consistent with patient autonomy. We use an ethical dilemma that was presented to a group of third-year medical students to examine how ethics education might be causing (...) them to give undue deference to autonomy, thereby undermining their commitment to beneficence. INTRODUCTION The right of patients to choose which treatments they prefer is rooted in today’s social mores and taught as a principle of medical ethics as respect for autonomy. Yet, when physicians use their clinical knowledge and skills to advance the well-being of their patients, there may be a conflict between patient autonomy and physician beneficence. We are skeptical that today’s medical ethics education adequately fosters a commitment to beneficence, which is both rationally defensible and fundamentally consistent with patient autonomy. I. An Ethical Dilemma The impetus for this paper arose when students who were completing their third clinical year discussed a real-life ethical dilemma. A middle-aged man developed a pulmonary hemorrhage while on blood thinners for a recently placed coronary stent. The bleeding was felt to be reversible, but the patient needed immediate intubation or he would die. The cardiologist was told that the patient previously expressed to other physicians that he never wanted to be intubated. However, the cardiologist made the decision to intubate the patient anyway, and the patient eventually recovered.[1] Students were asked if they believed that the cardiologist had acted ethically. Their overwhelming response was, “No, the patient should have been allowed to die.” We looked into how students applied ethical reasoning to conclude that this outcome was ethically preferred. To explore how the third-year clinical experience might have formed the students’ judgment, we presented the same case to students who were just beginning their third year. Their responses were essentially uniform in recommending intubation. While there is likely more than one reasonable view in this case, we agree with the physician and the younger medical students that intubation was the ethically appropriate decision and will present an argument for it. But first, we explain the reasoning behind the more advanced medical students’ decision to choose patient autonomy at the expense of beneficence. II. Medical Ethics Education and the Priority of Autonomy Beauchamp and Childress’s Principles of Biomedical Ethics, first published in 1979 and now in its 8th edition, is a significant part of the formal ethics education in medical school.[2] Students learn an ethical decision-making approach based on respect for four ethical principles: autonomy, beneficence, nonmaleficence, and justice. While Beauchamp and Childress officially afford no prima facie superiority to any principle, the importance of respect for patient autonomy has increased through the editions of their book. For example, early editions of their book opposed the legalization of physician-assisted death compared to recent editions that defended it.[3] As another example, Beauchamp and Childress make paternalism harder to justify by adding an autonomy-protecting condition to the list of conditions for acceptable paternalism.[4] Authority, they contend, need not conflict with autonomy—provided the authority is autonomously chosen.[5] “The main requirement,” they write, “is to respect a particular patient’s or subject’s autonomous choices, whatever they may be.[6] In the principlism of Beauchamp and Childress, autonomy now seems to have a kind of default priority.[7] However, the bioethics discourse has strong counternarratives, noting some movement to elevate the role of beneficence and to respect the input of stakeholders, including the family and the healthcare team. Ethics education achieves particular relevance in the third clinical year when students become embedded in the care of patients and learn from what has been called the informal curriculum. They observe how attending physicians approach day-to-day ethical problems at the patient’s bedside. In this context, students observe the importance of informed consent for serious treatments or invasive procedures, a practice that highlights the principle of patient autonomy. In both the formal and informal curriculum, medical students observe how, in the words of Paul Wolpe, “patient autonomy has become the central and most powerful principle in ethical decision-making in American medicine.”[8] In short, students appear to learn a deference for patient autonomy. This curricular shift in favor of autonomy coincides with legal developments that protect patients’ rights and decision-making with respect to their healthcare choices. The priority of autonomy in medicine benefits patients by reflecting their choices and, in some cases, their fundamental liberty. III. The Practice of Medicine and the Commitment to Beneficence There are many critiques of the dominant place that autonomy has in biomedical ethics,[9] especially considering that autonomy seems to be biased toward individualistic, Western, and somewhat American culture-driven values.[10] In addition, many bioethical dilemmas are cast as a conflict between autonomy and beneficence. Our point is that medical students bring to their study of medicine a commitment to beneficence that seems to be suppressed by practical ethics education. We think this commitment is rationally defensible and should be nurtured. It is striking that young medical students have a pre-reflective commitment to beneficence at all. For, as we mentioned, it is not just medicine but Western culture generally that prioritizes autonomy in settling ethical dilemmas. In wanting to act for the good of others (rather than simply agreeing to what others want), physicians are already swimming somewhat against the cultural tide.[11] However, doing so makes sense, given the nature of medicine and the profession of healing. When prospective medical students are asked why they wish to become physicians, the usual answer is some variation on caring for the sick and preventing disease. It is unlikely that a reason to become a physician is to respect a patient’s autonomy. It would be easy to dismiss medical students’ commitment to beneficence as a mere intuition and contrary to a more reasoned and deliberative approach. Beauchamp and Childress seem to minimize the value of physician intuition, stating that justifications for certain procedures are “…supported by good reasons. They need not rest merely in intuition or feeling.”[12] Henry Richardson writes that “situational or perceptive intuition…leaves the reasons for decision unarticulated.”[13] We think this is a crude and rather thin way of understanding intuition. Some bioethicists have defended intuition as essential to the practice of medicine and not something opposed to reason.[14] In the case we describe, we believe the ethical justifications s for the patient’s intubation are fundamentally sound: the patient did not have a “do not intubate” order written in the chart, the emergency intubation had not been foreseen, so the patient did not have the opportunity to consent to or reject intubation; the patient had consented to the treatment for his cardiac disease so his consent for intubation could have been assumed;[15] and the consequences of respecting his autonomy did not justify allowing him to die.[16] While it is possible to have more than one reasonable view on this case, we think the case for beneficence is strong and certainly should not be dismissed out of hand. We do not deny that if a patient makes a clearly documented, well-informed decision to forgo intubation that this decision ought to be respected by the physician (even if the physician disagrees with the patient’s decision). But, in this situation, as in many others in the practice of medicine, the patient’s real wishes and preferences are not well-articulated in advance. There are many cases where a physician acts based on what she believes the patient, or the surrogate, would want, sometimes in situations that do not allow much time for reflection. An example might be resuscitation of a newborn at the borderline of viability. In their ethics education, beneficence would mean acting first to save a life. If the patient or surrogate makes an informed decision to the contrary, a beneficent physician respects that autonomous decision. In the case presented, the patient expressed gratitude to the cardiologist when extubated. But what if he had expressed anger at the physician for violating his autonomy? There are those who could argue that not only was intubation ethically wrong but that the cardiologist put himself in legal jeopardy by his actions (especially if there had been a written refusal applicable to the specific situation). In the example we use, we point out that the cardiologist may not have escaped a lawsuit if the patient had died without intubation. His family, when hearing the circumstances, may have sued for failure to act and dereliction of the cardiologist’s duty to save him. Beyond a potential legal challenge for either action or inaction, there is an overriding ethical question the cardiologist had to address: what course would be most satisfying to his conscience? Would he rather allow a patient to die for fear of recrimination, or act to save his life, regardless of the personal consequences? In the absence of real knowledge about the patient’s considered wishes, it is most reasonable to err on the side of promoting patient well-being. A physician’s commitment to beneficence is not necessarily a way of undermining a patient’s autonomy. In acting for the patient's good, physicians are also acting on what it is reasonable to believe a patient (or most patients, perhaps) would want, which is obviously connected to what a patient does want. Pellegrino and Thomasma argue that beneficence includes respect for a patient’s autonomy since “the best interests of the patient are intimately linked with their preferences.”[17] Instead of conceptualizing ethical dilemmas in medicine as conflicts between autonomy and beneficence, it is possible that medical schools could teach students that truly practicing beneficence is a way of valuing patient autonomy, especially when the patient’s wishes are not specific to the situation and are not clearly expressed. CONCLUSION It is important for students and practicing physicians to understand the principle of respect for patient autonomy in a pluralistic society that demands personal self-determination. However, the role of the physician as a beneficent healer should not be diminished by this respect for autonomy. Respecting a patient’s autonomy is grounded in and manifested by physician beneficence.[18] That is, seeking what is good for the patient can only be good if it respects their personhood and dignity. We propose that a commitment to beneficence, incipient in young medical students, should be developed over time with their other clinical reasoning skills. Such a commitment need not be sacrificed on the altar of patient autonomy. Beneficence needs greater relative moral weight with students as they proceed in their ethics education. - [1] S. Jauhar, “When Doctors Need to Lie,” New York Times, February 22, 2014, https://www.nytimes.com/2014/02/23/opinion/sunday/when-doctors-need-to-lie.html. [2] T. L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 8th ed. (New York, NY: Oxford University Press, 2019). [3] Louise A. Mitchell, “Major Changes in Principles of Biomedical Ethics,” The National Catholic Bioethics Quarterly 14, no. 3 (2014): 459–75, https://doi.org/10.5840/ncbq20141438. [4] Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 8th ed. (New York, NY: Oxford University Press, 2019), 238. [5] Beauchamp and Childress, 103. [6] Beauchamp and Childress, p. 108. [7] For other accounts that prioritize autonomy, see e.g. Allen E. Buchanan and Dan W. Brock, Deciding for Others: The Ethics of Surrogate Decision Making (Cambridge University Press, 1989), 38–39; R Gillon, “Ethics Needs Principles—Four Can Encompass the Rest—and Respect for Autonomy Should Be ‘First among Equals,’” Journal of Medical Ethics 29, no. 5 (October 2003): 307–12, https://doi.org/10.1136/jme.29.5.307. For examples of critiques of these accounts, see footnote 9. [8] P. R. Wolpe, “The Triumph of Autonomy in American Bioethics: A Sociological View,” in Bioethics and Society: Constructing the Ethical Enterprise, p. 43. [9] V. A. Entwistle et al., “Supporting Patient Autonomy: The Importance of Clinician-Patient Relationships,” Journal of General Internal Medicine 25, no. 7 (July 2010): 741–45; C. Foster, Choosing Life, Choosing Death: The Tyranny of Autonomy in Medical Ethics and Law, 1st ed. (Oxford ; Hart Publishing, 2009); O. O’Neill, Autonomy and Trust in Bioethics, The Gifford Lectures, University of Edinburgh 2001 (Cambridge, UK: Cambridge University Press, 2002). [10] P. Marshall and B. Koenig, “Accounting for Culture in a Globalized Bioethics,” The Journal of Law, Medicine & Ethics: A Journal of the American Society of Law, Medicine & Ethics 32, no. 2 (2004): 252–66; R. Fan, “Self-Determination vs. Family-Determination: Two Incommensurable Principles of Autonomy,” Bioethics 11, no. 3–4 (1997): 309–22. [11] Arguments stressing the importance of beneficence, as ours does here, certainly approach paternalistic arguments. We set aside the complex issue of paternalism for purposes of this paper and simply note that the principle of beneficence as such does not say anything specifically about acting against the patient’s will. In the case study that focuses this paper, we do not believe the patient’s will or wishes were clearly indicated. [12] Beauchamp and Childress, Principles of Biomedical Ethics, p. 20, see note 2 above. [13] H. S. Richardson, “Specifying, Balancing, and Interpreting Bioethical Principles,” The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine 25, no. 3 (January 1, 2000): 285–307, p. 287. [14] H. D. Braude, Intuition in Medicine a Philosophical Defense of Clinical Reasoning (Chicago ; University of Chicago Press, 2012). [15] R. Kukla, “Conscientious Autonomy: Displacing Decisions in Health Care,” The Hastings Center Report 35, no. 2 (2005): 34–44. [16] M. Schermer, The Different Faces of Autonomy: Patient Autonomy in Ethical Theory and Hospital Practice, vol. 13, Library of Ethics and Applied Philosophy (Dordrecht: Springer Netherlands, 2002). [17] E. D. Pellegrino and D. C. Thomasma, For the Patient’s Good - the Restoration of Beneficence in Health Care (New York, NY: Oxford University Press, 1988), p. 29. [18] Pellegrino and Thomasma, For the Patient’s Good. 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Objectives: To analyse the decision making for end of life care for patients with cancer at a teaching hospital in Japan at two periods 10 years apart.Design and setting: Retrospective study conducted in a 550 bed community teaching hospital in Okinawa, Japan.Patients: There were 124 terminally ill cancer patients admitted either in 1989 and 1999 for end of life care with sufficient data to permit analysis.Main measurements: Basic demographic data, notification to the patient that he or she (...) had cancer, patient involvement in do not resuscitate orders, and various medical interventions which were performed in the month prior to the patient’s death were evaluated.Results: In 1989 none of the patients were notified of their diagnosis; in 1999 five patients were informed . Of the 113 patients with a written DNR order, none were involved in consenting to the DNR order. In the month before death, patients in both groups received non-palliative treatments such as feeding tube placements , total parenteral nutrition , and intravenous albumin infusion . Morphine use increased significantly in 1999 compared with the 1989 group.Conclusions: The majority of patients dying of cancer were still not informed of their diagnosis and were seldom involved in DNR decision making at a teaching hospital in Japan. There was no change in the number of potentially futile interventions that were performed but morphine use increased. Modern ethical education is urgently needed in Japanese medical practice to improve decision making process in the end of life care. (shrink)

In recent work, Norman Daniels extends the application of Rawls's principle of ‘fair equality of opportunity’ from health care to health proper. Crucial to that account is the view that health care, and now also health, is special. Daniels also claims that a rival theory of distributive justice, namely luck egalitarianism (or ‘equal opportunity for welfare’), cannot provide an adequate account of justice in health and health care. He argues that the application of that theory to health (...) policy would result in an account that is, in a sense, too narrow, for it denies treatment to imprudent patients (e.g. lung cancer patients who smoked). In a different sense, Daniels argues, luck egalitarian health policy would be too wide: it arguably tells us to treat individuals for such brute-luck conditions as shyness, stupidity, ugliness, and having the ‘wrong’ skin colour. I seek to advance three claims in response to Daniels's revised theory, and in defence of a luck egalitarian view of health policy. First, I question Daniels's assertion regarding the specialness of health. While he is right to abandon his insistence on the specialness of health care, it is doubtful that health proper can be depicted as special. Second, I try and meet Daniels's objections to luck egalitarianism. Luck egalitarian health policy escapes being too narrow for it does not in fact require denying basic care to imprudent patients. As for it being allegedly too wide, I try to show that it is not, after all, counterintuitive to rid individuals of unfortunate and disadvantageous biological traits (say, a disadvantageous skin colour). And third, I question whether Daniels's own Rawlsian account is in fact wide enough. I argue that fair equality of opportunity fails to justify some standard medical procedures that many health systems do already practice. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:"To make a difference...":Narrative Desire in Global MedicineByron J. Good and Mary-Jo DelVecchio GoodIf, as Arthur Frank (2002) writes, "moral life, for better and worse, takes place in storytelling," this collection of narratives written by physicians working in field settings in global medicine gives us a glimpse of some aspects of moral experience, practice, and dilemmas in settings of poverty and low health care resources. These essays are (...) written from the midst of practice, in diverse settings in Africa, South Asia, Latin America, the Caribbean, and the United States. The majority of the writers are practitioners of contemporary 'global medicine'—physicians from North America or Europe who spend part of their lives flying into settings of poverty or special need to practice medicine and work with on-going collaborative clinical and public health systems—while a smaller number are working in the societies in which they were born. Although a few work for classic humanitarian organizations or have developed their own local NGO's, the great majority are engaged in the 'hybrid life' described by Robert Riviello and noted by Renée Fox, moving between academic medical centers and distant health care systems that are supported by local governments, major international organizations and funding agencies, and international NGO's like Partners in Health. These diverse forms of practice have become a common model for contemporary clinicians engaged in what has emerged as a new discipline of global health or global medicine, and these narratives give us a glimpse of some of the enduring, as well as newly emerging, forms of moral practice and ethical dilemmas characteristic of today's global medicine.Many of these stories are filled with the tension and pathos that makes clinical narratives powerful to read. Physicians are forced to make unfathomable decisions about whether to resuscitate and keep a baby alive, using all means available, or to let the infant die, whether to carry out a procedure that will save an infant in birth but would put the mother at risk, about how to deal with a cancer found in a very advanced state. However, virtually all of the stories transcend these classical stories of the decisions physicians are forced to make by being placed in settings of great scarcity of resources, which stand in particular contrast to the academic medical settings in North America or Europe where many of these global medicine specialists have trained and many continue to practice. The unspeakable inequality of resources emerges throughout these narratives as a kind of master theme, as the underlying moral, as opposed to plot, which gives meaning and sense to the stories. For those who practice medicine in such settings, global inequalities and scarcity of medical resources are deeply felt. They produce the rage that Jeffrey Deal describes. ("I learned to despise American churches during that time, a time when my world encompassed a dying newborn in Sudan, as well as the air conditioned padded seats [End Page 121] of our affluent suburban church.") They produce the distinctive experiences of helplessness and pain felt by clinicians who cannot separate how they would be able to treat such a patient at home from how they have to practice in these settings. For those clinicians working in their own societies, scarcity of resources often produces deep anger at the corrupt governments that fail to support basic human services for the great majority of their population. ("We were temporary actors performing in the cynical play of scarcity on permanent display in Port-au-Prince," writes Haitian physician Paul Pierre about his experience prior to joining Partners in Health.)But for those who regularly travel back and forth across the divide between rich and poor, whether across national boundaries or within their own society, the challenge to live a moral life is unendingly complicated. While becoming a part of a struggle for global justice with colleagues and advocates from both sides of the divide, few of the narrators can avoid personal feelings of ambivalence and guilt at being able to easily move from one side of that divide to the other back home. Many fantasize about giving up their lives in the north to devote themselves... (shrink)

In nursing, the concept of advocacy is often understood in terms of reactive or proactive action aimed at protecting patients' legal or moral rights. However, advocacy activities have not often been researched in the context of everyday clinical nursing practice, at least from patients' point of view. This study investigated the implementation of nursing advocacy in the context of procedural pain care from the perspectives of both patients and nurses. The cross-sectional study was conducted on a cluster sample of (...) surgical otolaryngology patients (n = 405) and nurses (n = 118) from 12 hospital units in Finland. The data were obtained using an instrument specially designed for this purpose, and analysed statistically by descriptive and non-parametric methods. According to the results, patients and nurses have slightly different views about which dimensions of advocacy are implemented in procedural pain care. It seems that advocacy acts are chosen and implemented rather haphazardly, depending partly on how active patients are in expressing their wishes and interests and partly on nurses' empowerment. (shrink)

An eighteen‐year‐old with sickle cell disease was admitted to the pediatric hematology service at his local children's hospital for management of an acute pain crisis, one of many such admissions. He had a good relationship with his primary hematologist and primary nurse, but with other health care providers, there was evident friction. Sometimes, he was simply rude, rolling over and pretending to sleep in response to questions about his symptoms. When frustrated or convinced that his pain was not being (...) addressed appropriately, he was prone to yelling and cursing at his nurses. After members of the health care team complained, their supervisor decided to transfer the patient to an adult general medicine service. Reasons cited for the transition included the stressful work environment created by the patient's actions, his refusal to follow directives from staff (although he was generally adherent to treatment), and the hypothetical harm to other young patients who might witness his behavior. Was this a just outcome? Is it ever permissible to deny access to pediatric care to a patient whose best interests would be served by it? Can access be withheld for “bad” behavior, and can transfer of care be wielded as a punishment? (shrink)

This guide accompanies the following article(s): ‘Full Disclosure of the “Raw Data” of Research on Humans: Citizens’ Rights, Product Manufacturer’s Obligations and the Quality of the Scientific Database.’Philosophy Compass 6/2 (2011): 90–99. doi: 10.1111/j.1747‐9991.2010.00376.x Author’s Introduction Securing consent (and informed consent) from patients and research study participants is a key concern in patient care and research on humans. Yet, the legal doctrines of consent and informed consent differ in their applications. In patient care, the judicial doctrines of consent (...) and informed consent are disclosure doctrines based on the obligation of physicians to inform their patients of the following types of information: the nature of the procedure the physician is recommending in the patent’s care (P), the alternatives to the physician‐recommendation (A), and the risks of procedure and its alternatives (R). In addition, the physician must provide truthful answers to the patient’s questions (Q) to the best of the physician’s abilities. In research on humans, the onus of disclosure by study sponsors and principal investigators is much greater than in patient care precisely because the purpose of research is not patient care. The purpose of research is the identification and development of new generalizable knowledge. Thus, participation in a research study or trial may not benefit the study volunteer at all. In addition, the participant may carry a heavy risk burden in relationship to any testing of a newly designed drug or device as part of their experiences in the research study. Presently, despite the risks borne by the research study participant, the raw data collected from volunteers in research trials are treated by courts as if they were the private property of the study sponsor rather than generally owed to the public as would be expected by an effort like research participation aimed at contributing to the development of generalizable knowledge. This paper reviews the obligations that study sponsors owe to their study participants based on the very definition of research as a systematic activity whose purpose is to develop generalizable knowledge to help all humans. Author Recommends Court cases Canterbury v. Spence, United States Court of Appeals, District of Columbia Circuit 464 F.2d 772 (1972). (Federal appellate decision heard in the District of Columbia, USA) Reibl v. Hughes, 2 S.C.R. 880 (1980). (Supreme Court of Canada) Rogers v. Whitaker, 175 C.L. R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Canterbury v. Spence is the landmark Federal informed consent case in the United States heard in the District of Columbia. In this case, Judge Spottswood Robinson articulated the reasonable person standard of informed consent. This standard was subsequently adopted by the Supreme Court of Canada (Reibl v. Hughes, 2 S.C.R. 880 (1980)) and the High Court of Australia (Rogers v. Whitaker, 175 C.L. R. 479 (1992)). The House of Lords rejected the reasonable person standard in England in Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985). Book Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. This book is a detailed guide for the review of scientific and ethical aspects of research on humans contained in the research study protocols and research informed consent forms which need to be submitted by study sponsors and principal investigators to institutional review boards (IRBs) for IRB review before a research study can receive approval to be conducted within a human study population in those institutions over which the IRB has authority. It also presents basic definitions in the area of research on humans and basic approaches to help conduct a deep review of the underlying scientific and ethical issues that are present within a research study protocol and its accompanying research informed consent form. Report National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). This U.S. National Commission in the Belmont Report argued for the necessity of a reasonable volunteer standard in research on humans in the United States. Arguing that the professional standard and the reasonable person standard of consent and informed consent were insufficient to base a disclosure standard in research on humans, this National Commission developed the reasonable volunteer standard where a study participant is to be approached in research informed consent with that information that a reasonable volunteer would want to know. Online Materials Belmont Report: Syllabus Topics for Lecture and Discussion Week I: Introduction and Overview Readings: Rogers v. Whitaker, 175 C.L.R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week II: The Different Standards of Consent and Informed Consent Readings: Canterbury v. Spence, 464 F.2d 772 (1972). (Federal appellate opinion heard in the District of Columbia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week III: Definition of Research Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 2 and 3) Week IV: How to Review a Research Study Protocol and Research Informed Consent Form Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 4–6, 10, and 12–14) Week V: Obligations in Research of Humans Versus Patient Care Reading: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). Focus Questions • How do the judicial doctrines of consent in England and Australia compare to the judicial doctrines of informed consent in the United States and Canada? • How does a professional standard of disclosure differ from a reasonable person standard of disclosure? • What is the definition of research? • How is a research study (study proposal and research informed consent form) reviewed from scientific and ethical bases for considerations of approval by an IRB? • How do the obligations of a study sponsor, a principal investigator, and a research team conducting a research trial on human study participants differ from the obligations of a physician caring for a patient? • Should all raw data of research derived from humans be made available to the public for use in developing generalizable knowledge to help others, or should raw data be considered the private property of the study sponsors (for example, prescription drug manufacturers), who fund the research trials? Seminar/project Idea Draw a timeline of the development of the basic concepts of consent and informed consent in patient care and in patient research. On this timeline, first place the dates of the key court cases in England, the United States, Canada, and Australia on consent and informed consent. Then place the date of the development of the Belmont Report. Why do differences exist between these four countries in terms of the legal requirements of informedness of a patient (in medical care) and a study participant (in medical research)? What roles if any do the concepts of self‐determination and self‐decision have in consent and informed consent in patient care and in informed consent in research on humans among the four countries of interest? What are the realities of research on human participants that require a new standard of informed consent, the reasonable volunteer standard, to be developed beyond the two standards in patient care, the professional standard, and the reasonable person standard? Counterpoint Arguments The following are counterpoint arguments that need to be appreciated to more fully understand the concepts that impact the thesis that ‘raw data’ should be open to the public to allow the opportunity of checking of the results of its associated scientific paper and for further analysis. De‐Identified (Anonymized) Raw Data A current approach to identifying (anonymizinig) raw data is based on the Health Insurance Portability and Accountability Act (HIPAA) of 1996 (P.L.104‐191). HIPAA was enacted by the U.S. Congress in 1996 to keep a person’s medical information private. In a research study, a person’s private medical information can become research data. HIPAA’s Privacy Rule allows a covered entity to de‐identify data by removing all 18 elements that could be used to identify the individual or the individual’s relatives, employers, or household members; these elements are enumerated in the Privacy Rule. The covered entity must also have no actual knowledge that the remaining information could be used alone or in combination with other information to identify the individual who is the subject of the information. Under this method, the identifiers that must be removed are the following: 1 Names. 2 All geographic subdivisions smaller than a state, including street address, city, county, precinct, ZIP Code, and their equivalent geographical codes, except for the initial three digits of a ZIP Code if, according to the current publicly available data from the Bureau of the Census: 2a. The geographic unit formed by combining all ZIP Codes with the same three initial digits contains more than 20,000 people. 2b. The initial three digits of a ZIP Code for all such geographic units containing 20,000 or fewer people are changed to 000. 3 All elements of dates (except year) for dates directly related to an individual, including birth date, admission date, discharge date, and date of death, and all ages over 89 and all elements of dates (including year) indicative of such age, except that such ages and elements may be aggregated into a single category of age 90 or older. 4 Telephone numbers. 5 Facsimile numbers. 6 Electronic mail addresses. 7 Social security numbers. 8 Medical record numbers. 9 Health plan beneficiary numbers. 10 Account numbers. 11 Certificate/license numbers. 12 Vehicle identifiers and serial numbers, including license plate numbers. 13 Device identifiers and serial numbers. 14 Web universal resource locators (URLs). 15 Internet protocol (IP) address numbers. 16 Biometric identifiers, including fingerprints and voiceprints. 17 Full‐face photographic images and any comparable images. 18 Any other unique identifying number, characteristic, or code, unless otherwise permitted by the Privacy Rule for re‐identification. Even though ‘raw data’ can be de‐identified (anonymized) so that there is no way to trace back the data to the study participant from which it was drawn, there are still questions whether the ‘de‐identified raw data’ can be given to other researchers or made public without the original study participant’s approval. It may be the case that this approval could be done at the start of any research study where the individual considering study participation would be counseled on what the process of de‐identification consists of and would be asked whether the participant would allow use of the data by other researchers or made available to the public in a de‐identified state. However, there may be questions of the study participants as to whether the data are truly de‐identified and untraceable back to the study participant since the participant would not be able to see the process actually being carried out in detail in all relevant circumstances. Using Raw Data in Context Simply being in possession of raw data is never enough to build on that data from a research perspective. Researchers need to understand the context of the scientific research study in which the data were collected. This research context includes (but is not limited to): (i) the scientific hypothesis of the research study, (ii) the inclusion and exclusion criteria selected by the research designers of the study to determine which study participants were included and which were excluded from the study, (iii) the methods used to collect the data and possibilities of errors in the data collection processes, and (iv) answers to questions regarding whether any data were excluded from the study data and why these data were excluded. Ownership Rights Over Data There are ownership rights over data. Ownership rights include court decision making related to the question which parties are to be considered as the owners of the data. Possible owners here include (but are not limited to) (i) the study sponsor whose only role was to fund that study, (ii) the principal investigator(s) who developed the scientific hypothesis, and (iii) individual study participants through special contracts made by individual participants who negotiate such contracts with study sponsors and principal investigators to share in the ownership of data. Examples of such data are participant sources of unique gene lines or unique cell lines to be used in future research. Objections to Data Sharing Finally, individual researchers may simply object to sharing data. A researcher’s arguments here may be simply stating that he or she has a right to fully analyze the data since the collection of the data was the researchers’ idea in the first place. These researchers may argue that they have the right to mine the data as fully as they can before deciding to make the data open to the public for others to analyze. Works Cited 1 Kaiser, J. ‘Making Clinical Data Widely Available.’Science 322.5899 (10 Oct. 2008): 217–8. 2 de Lusignan, S., J.F. Metsemakers, P. Houwink, V. Gunnarsdottir, and J. van der Lei. ‘Routinely Collected General Practice Data: Goldmines for Research? A Report of the European Federation for Medical Informatics Primary Care Informatics Working Group (EFMI PCIWG) from MIE2006, Maastricht, The Netherlands.’Informatics in Primary Care 14.3 (2006): 203–9. 3 Sim, I. ‘Human Studies Database Project’, CTSA Data Repositories Symposium (17 Oct. 2008). 23 Nov. 2010. 4 Sim, I., C.G. Chute, H. Lehmann, R. Nagarajan, M. Nahm, and R.H. Scheuermann. ‘Keeping Raw Data in Context.’Science 323.5915 (6 Feb. 2009): 713. 5 U.S. Department of Health and Human Services, National Institutes of Health, HIPAA Privacy Rule, Information for Researchers. 13 Nov. 2010. 6 Wilczynski, N.L., R.B. Haynes, and Hedges Team. ‘EMBASE Search Strategies for Identifying Methodologically Sound Diagnostic Studies for Use by Clinicians and Researchers.’BMC Medicine 29.3 (March 2005): 7. (shrink)

This guide accompanies the following article(s): ‘Full Disclosure of the “Raw Data” of Research on Humans: Citizens’ Rights, Product Manufacturer’s Obligations and the Quality of the Scientific Database.’Philosophy Compass 6/2 (2011): 90–99. doi: 10.1111/j.1747‐9991.2010.00376.x Author’s Introduction Securing consent (and informed consent) from patients and research study participants is a key concern in patient care and research on humans. Yet, the legal doctrines of consent and informed consent differ in their applications. In patient care, the judicial doctrines of consent (...) and informed consent are disclosure doctrines based on the obligation of physicians to inform their patients of the following types of information: the nature of the procedure the physician is recommending in the patent’s care (P), the alternatives to the physician‐recommendation (A), and the risks of procedure and its alternatives (R). In addition, the physician must provide truthful answers to the patient’s questions (Q) to the best of the physician’s abilities. In research on humans, the onus of disclosure by study sponsors and principal investigators is much greater than in patient care precisely because the purpose of research is not patient care. The purpose of research is the identification and development of new generalizable knowledge. Thus, participation in a research study or trial may not benefit the study volunteer at all. In addition, the participant may carry a heavy risk burden in relationship to any testing of a newly designed drug or device as part of their experiences in the research study. Presently, despite the risks borne by the research study participant, the raw data collected from volunteers in research trials are treated by courts as if they were the private property of the study sponsor rather than generally owed to the public as would be expected by an effort like research participation aimed at contributing to the development of generalizable knowledge. This paper reviews the obligations that study sponsors owe to their study participants based on the very definition of research as a systematic activity whose purpose is to develop generalizable knowledge to help all humans. Author Recommends Court cases Canterbury v. Spence, United States Court of Appeals, District of Columbia Circuit 464 F.2d 772 (1972). (Federal appellate decision heard in the District of Columbia, USA) Reibl v. Hughes, 2 S.C.R. 880 (1980). (Supreme Court of Canada) Rogers v. Whitaker, 175 C.L. R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Canterbury v. Spence is the landmark Federal informed consent case in the United States heard in the District of Columbia. In this case, Judge Spottswood Robinson articulated the reasonable person standard of informed consent. This standard was subsequently adopted by the Supreme Court of Canada (Reibl v. Hughes, 2 S.C.R. 880 (1980)) and the High Court of Australia (Rogers v. Whitaker, 175 C.L. R. 479 (1992)). The House of Lords rejected the reasonable person standard in England in Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985). Book Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. This book is a detailed guide for the review of scientific and ethical aspects of research on humans contained in the research study protocols and research informed consent forms which need to be submitted by study sponsors and principal investigators to institutional review boards (IRBs) for IRB review before a research study can receive approval to be conducted within a human study population in those institutions over which the IRB has authority. It also presents basic definitions in the area of research on humans and basic approaches to help conduct a deep review of the underlying scientific and ethical issues that are present within a research study protocol and its accompanying research informed consent form. Report National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). This U.S. National Commission in the Belmont Report argued for the necessity of a reasonable volunteer standard in research on humans in the United States. Arguing that the professional standard and the reasonable person standard of consent and informed consent were insufficient to base a disclosure standard in research on humans, this National Commission developed the reasonable volunteer standard where a study participant is to be approached in research informed consent with that information that a reasonable volunteer would want to know. Online Materials Belmont Report: Syllabus Topics for Lecture and Discussion Week I: Introduction and Overview Readings: Rogers v. Whitaker, 175 C.L.R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week II: The Different Standards of Consent and Informed Consent Readings: Canterbury v. Spence, 464 F.2d 772 (1972). (Federal appellate opinion heard in the District of Columbia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week III: Definition of Research Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 2 and 3) Week IV: How to Review a Research Study Protocol and Research Informed Consent Form Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 4–6, 10, and 12–14) Week V: Obligations in Research of Humans Versus Patient Care Reading: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). Focus Questions • How do the judicial doctrines of consent in England and Australia compare to the judicial doctrines of informed consent in the United States and Canada? • How does a professional standard of disclosure differ from a reasonable person standard of disclosure? • What is the definition of research? • How is a research study (study proposal and research informed consent form) reviewed from scientific and ethical bases for considerations of approval by an IRB? • How do the obligations of a study sponsor, a principal investigator, and a research team conducting a research trial on human study participants differ from the obligations of a physician caring for a patient? • Should all raw data of research derived from humans be made available to the public for use in developing generalizable knowledge to help others, or should raw data be considered the private property of the study sponsors (for example, prescription drug manufacturers), who fund the research trials? Seminar/project Idea Draw a timeline of the development of the basic concepts of consent and informed consent in patient care and in patient research. On this timeline, first place the dates of the key court cases in England, the United States, Canada, and Australia on consent and informed consent. Then place the date of the development of the Belmont Report. Why do differences exist between these four countries in terms of the legal requirements of informedness of a patient (in medical care) and a study participant (in medical research)? What roles if any do the concepts of self‐determination and self‐decision have in consent and informed consent in patient care and in informed consent in research on humans among the four countries of interest? What are the realities of research on human participants that require a new standard of informed consent, the reasonable volunteer standard, to be developed beyond the two standards in patient care, the professional standard, and the reasonable person standard? Counterpoint Arguments The following are counterpoint arguments that need to be appreciated to more fully understand the concepts that impact the thesis that ‘raw data’ should be open to the public to allow the opportunity of checking of the results of its associated scientific paper and for further analysis. De‐Identified (Anonymized) Raw Data A current approach to identifying (anonymizinig) raw data is based on the Health Insurance Portability and Accountability Act (HIPAA) of 1996 (P.L.104‐191). HIPAA was enacted by the U.S. Congress in 1996 to keep a person’s medical information private. In a research study, a person’s private medical information can become research data. HIPAA’s Privacy Rule allows a covered entity to de‐identify data by removing all 18 elements that could be used to identify the individual or the individual’s relatives, employers, or household members; these elements are enumerated in the Privacy Rule. The covered entity must also have no actual knowledge that the remaining information could be used alone or in combination with other information to identify the individual who is the subject of the information. Under this method, the identifiers that must be removed are the following: 1 Names. 2 All geographic subdivisions smaller than a state, including street address, city, county, precinct, ZIP Code, and their equivalent geographical codes, except for the initial three digits of a ZIP Code if, according to the current publicly available data from the Bureau of the Census: 2a. The geographic unit formed by combining all ZIP Codes with the same three initial digits contains more than 20,000 people. 2b. The initial three digits of a ZIP Code for all such geographic units containing 20,000 or fewer people are changed to 000. 3 All elements of dates (except year) for dates directly related to an individual, including birth date, admission date, discharge date, and date of death, and all ages over 89 and all elements of dates (including year) indicative of such age, except that such ages and elements may be aggregated into a single category of age 90 or older. 4 Telephone numbers. 5 Facsimile numbers. 6 Electronic mail addresses. 7 Social security numbers. 8 Medical record numbers. 9 Health plan beneficiary numbers. 10 Account numbers. 11 Certificate/license numbers. 12 Vehicle identifiers and serial numbers, including license plate numbers. 13 Device identifiers and serial numbers. 14 Web universal resource locators (URLs). 15 Internet protocol (IP) address numbers. 16 Biometric identifiers, including fingerprints and voiceprints. 17 Full‐face photographic images and any comparable images. 18 Any other unique identifying number, characteristic, or code, unless otherwise permitted by the Privacy Rule for re‐identification. Even though ‘raw data’ can be de‐identified (anonymized) so that there is no way to trace back the data to the study participant from which it was drawn, there are still questions whether the ‘de‐identified raw data’ can be given to other researchers or made public without the original study participant’s approval. It may be the case that this approval could be done at the start of any research study where the individual considering study participation would be counseled on what the process of de‐identification consists of and would be asked whether the participant would allow use of the data by other researchers or made available to the public in a de‐identified state. However, there may be questions of the study participants as to whether the data are truly de‐identified and untraceable back to the study participant since the participant would not be able to see the process actually being carried out in detail in all relevant circumstances. Using Raw Data in Context Simply being in possession of raw data is never enough to build on that data from a research perspective. Researchers need to understand the context of the scientific research study in which the data were collected. This research context includes (but is not limited to): (i) the scientific hypothesis of the research study, (ii) the inclusion and exclusion criteria selected by the research designers of the study to determine which study participants were included and which were excluded from the study, (iii) the methods used to collect the data and possibilities of errors in the data collection processes, and (iv) answers to questions regarding whether any data were excluded from the study data and why these data were excluded. Ownership Rights Over Data There are ownership rights over data. Ownership rights include court decision making related to the question which parties are to be considered as the owners of the data. Possible owners here include (but are not limited to) (i) the study sponsor whose only role was to fund that study, (ii) the principal investigator(s) who developed the scientific hypothesis, and (iii) individual study participants through special contracts made by individual participants who negotiate such contracts with study sponsors and principal investigators to share in the ownership of data. Examples of such data are participant sources of unique gene lines or unique cell lines to be used in future research. Objections to Data Sharing Finally, individual researchers may simply object to sharing data. A researcher’s arguments here may be simply stating that he or she has a right to fully analyze the data since the collection of the data was the researchers’ idea in the first place. These researchers may argue that they have the right to mine the data as fully as they can before deciding to make the data open to the public for others to analyze. Works Cited 1 Kaiser, J. ‘Making Clinical Data Widely Available.’Science 322.5899 (10 Oct. 2008): 217–8. 2 de Lusignan, S., J.F. Metsemakers, P. Houwink, V. Gunnarsdottir, and J. van der Lei. ‘Routinely Collected General Practice Data: Goldmines for Research? A Report of the European Federation for Medical Informatics Primary Care Informatics Working Group (EFMI PCIWG) from MIE2006, Maastricht, The Netherlands.’Informatics in Primary Care 14.3 (2006): 203–9. 3 Sim, I. ‘Human Studies Database Project’, CTSA Data Repositories Symposium (17 Oct. 2008). 23 Nov. 2010. 4 Sim, I., C.G. Chute, H. Lehmann, R. Nagarajan, M. Nahm, and R.H. Scheuermann. ‘Keeping Raw Data in Context.’Science 323.5915 (6 Feb. 2009): 713. 5 U.S. Department of Health and Human Services, National Institutes of Health, HIPAA Privacy Rule, Information for Researchers. 13 Nov. 2010. 6 Wilczynski, N.L., R.B. Haynes, and Hedges Team. ‘EMBASE Search Strategies for Identifying Methodologically Sound Diagnostic Studies for Use by Clinicians and Researchers.’BMC Medicine 29.3 (March 2005): 7. (shrink)

BackgroundAs a number of commentators have noted, SARS exposed the vulnerabilities of our health care systems and governance structures. Health care professionals (HCPs) and hospital systems that bore the brunt of the SARS outbreak continue to struggle with the aftermath of the crisis. Indeed, HCPs – both in clinical care and in public health – were severely tested by SARS. Unprecedented demands were placed on their skills and expertise, and their personal commitment to their profession was severely (...) tried. Many were exposed to serious risk of morbidity and mortality, as evidenced by the World Health Organization figures showing that approximately 30% of reported cases were among HCPs, some of whom died from the infection. Despite this challenge, professional codes of ethics are silent on the issue of duty to care during communicable disease outbreaks, thus providing no guidance on what is expected of HCPs or how they ought to approach their duty to care in the face of risk.DiscussionIn the aftermath of SARS and with the spectre of a pandemic avian influenza, it is imperative that we (re)consider the obligations of HCPs for patients with severe infectious diseases, particularly diseases that pose risks to those providing care. It is of pressing importance that organizations representing HCPs give clear indication of what standard of care is expected of their members in the event of a pandemic. In this paper, we address the issue of special obligations of HCPs during an infectious disease outbreak. We argue that there is a pressing need to clarify the rights and responsibilities of HCPs in the current context of pandemic flu preparedness, and that these rights and responsibilities ought to be codified in professional codes of ethics. Finally, we present a brief historical accounting of the treatment of the duty to care in professional health care codes of ethics.SummaryAn honest and critical examination of the role of HCPs during communicable disease outbreaks is needed in order to provide guidelines regarding professional rights and responsibilities, as well as ethical duties and obligations. With this paper, we hope to open the social dialogue and advance the public debate on this increasingly urgent issue. (shrink)

Health care professionals are one of a large group of individuals who are exposed to significant risks by virtue of their occupation, such as the police, mountain rescuers, fire-service. The types of risk to which health care professionals are exposed are numerous, many of which remain largely unrecognised by the public and may even be underestimated by the professionals themselves. Examples of these health risks include fatigue, emotional/psychological trauma, physical injury caused by the use of machinery, back injuries, (...) possible even violent physical assault from a patient or hospital visitor. There is also a very significant risk of acquiring an illness in the course of employment, for example, physical damage caused by the prolonged use of toxic substances, and also infectious diseases which are acquired by various routes, such as air-borne infections, needle-stick injuries. Subjective risk evaluation and the notion of risk in health care from the patients' perspective has been widely considered over many years, and in a number of different areas, including medical research, screening procedures, consent to surgery or other medical intervention. In this paper, however, the moral dilemmas which may arise for health care professionals in relation to health risks are highlighted and specific questions are raised. (shrink)

Is it possible to use the courts - or rights instruments - to advance fair access to health care? This article examines this question within the context of the Norwegian public health care system - one special example of the Scandinavian welfare system. In particular, it asks four basic questions: What are the normative justifications for rights to health care? What were the political processes and concerns leading up to the current Patients Rights Act in Norway? (...) What kind of legal status do these rights have? How can rights to access be implemented?Patient rights do not only concern the right to access to health care; they also include the right to information, the right to participate in decision-making, and informed consent. This article examines only the former aspect, the use of the legal system to secure access to prioritized specialized health care services. (shrink)

The prescription of practice guidelines for consent in neonatal care that are appropriate for all interventions faces substantial problems. Current practice varies widely. Consent in neonatal care is compromised by postnatal constraints on information sharing and decision-making. Empirical research shows marked individual and cultural variation in the degree to which parents want to contribute to decision-making on behalf of their infants. Conflict between the parents’ wishes and the infant’s best interests could arise if consent for a recommended intervention (...) were refused, and parental refusal of consent may have to be overridden. Consent to an appropriate package of care (such as special, intensive or palliative care) may be morally preferable to a universal requirement to seek consent for all individual interventions entailed by that package. (shrink)

Power is a matter of authority and control. It can be wielded either consciously or unconsciously, and it can be either overt or latent. Using a structured questionnaire, this study set out to describe nurses’ opinions about the exercise of power in basic care situations in both acute and long-term care. The questionnaire was organized into four categories in which items concerned: power in obligatory daily activities; power in activities necessitated by obligatory activities; power in voluntary activities; (...) and power in activities that take into account the patient’s characteristics. The samples consisted of 228 nurses from five medical and surgical wards of district hospitals, and 233 nurses from five geriatric units of a community health centre and from one nursing home in Finland. The final response rate was 65% (acute care 76%; long-term care 55%). Data analysis was based on statistical methods. The results showed that, in the nurses’ own opinion, negative power is exercised only in certain situations and in the patient’s best interest, when for instance there are concerns that something may happen to the patient. (shrink)

Effective altruism is the project of using resources like time and money to help others as much as possible. Those who engage in this project—effective altruists—tend to focus on three ways of helping.First, effective altruists focus on helping people living in extreme poverty and typically support interventions that prevent diseases such as malaria, trachoma, and schistosomiasis. These interventions have been shown to be highly cost-effective. For example, it costs on average about $4,500 to prevent someone from dying of malaria.Second, (...) effective altruists focus on reducing animal suffering. For example, tens of billions of animals are raised each year on factory farms. The conditions on these farms are so poor that the animals’ lives are probably not worth living. A host of charities aim to improve conditions on these farms or reduce the number of animals raised on them.Finally, effective altruists focus on improving the long-term future. This often takes the form of safeguarding the very existence of humanity's future by reducing risks of existential catastrophe posed by threats like nuclear weapons, pandemics, and artificial intelligence. It is frequently argued that, since there is vast value in avoiding such catastrophes, reducing the risk of any of them even fractionally has relatively high expected value.Each of these three ways of helping has been argued to be the most cost-effective way to help, that is, what makes the biggest positive difference, per dollar donated (or hour of time volunteered). There is disagreement among effective altruists over which of these areas, if any, should be the top priority.The effective altruism social movement has been around since about 2011 and now has thousands of supporters and is backed by billions of dollars in donations. At the same time, the project, underlying philosophy, and social movement of effective altruism have attracted substantial criticism, voiced in very visible venues. The present special issue of PAQ deals with a range of philosophical issues at the heart of this ongoing public debate. Below is a very brief overview of the articles in this issue.In “Why Not Effective Altruism?” Richard Yetter Chappell takes a careful look at criticisms that have been offered against effective altruism. He focuses on four ideas associated with effective altruism that have received particular attention, including moral prioritization, earning to give, billionaire philanthropy, and longtermism. Chappell argues that, in each case, the core moral claims of effective altruism cannot reasonably be rejected.In “Effective Altruists Need Not Be Pronatalist Longtermists,” Tina Rulli offers a sustained rebuttal to the argument for longtermism presented by William MacAskill in his recent book What We Owe the Future. In particular, she objects to pronatalist longtermism, which favors extensively populating the future, provided the future will be on balance good. Rulli argues that taking account of moral considerations most would recognize shows this position to be implausible. Her view is nonetheless compatible with versions of longtermism that focus on preventing harms to future people.In “How (Not) to Fear Death,” Susanne Burri provides a fresh perspective on the ancient question of whether we should fear death. She argues that, on a wide range of theories of well-being, it can be fitting to fear death. Burri argues that having a proper philosophical understanding of our reasons to fear death is in fact essential to reducing our death-related fears. This, she argues, provides an example of philosophical therapy, a neglected type of intervention effective altruists should consider. Given that the dissemination of valuable philosophical insight is so cheap, and could significantly benefit so many, it can and should be pursued alongside more resource-intensive interventions such as distributing malaria nets or reducing existential risks.In “Effective Altruism and Requiring Reasons to Help Others,” Thomas Sinclair provides a response to one of the main claims of my recent (2023) book The Rules of Rescue. I claim that each of us has a requiring reason (or pro tanto duty) to prevent harm to others, whenever we have the opportunity to do so. I argue that since these opportunities are ubiquitous, so, too, are requiring reasons. In response, Sinclair argues that we have requiring reasons to help others only when we engage with the plights of these others in a certain way. That engagement is not ubiquitous; it is present in cases of nearby emergency rescues, but it is not present simply whenever we can donate to effective charities.Philosophical debates surrounding effective altruism have developed rapidly over the past decade or so. As the articles in this special issue suggest, there is still much to be explored. (shrink)

In the aftermath of allegations of the misuse of human eggs in the United States, questions are being raised about whether profitable reproductive services should continue to function in a free market under the aegis of physicians or should be regulated. Other countries in which reproductive technologies are employed to a significant degree have developed regulations governing their use, many as a result of recommendations made by inter‐disciplinary commissions that solicited public input. Policy makers in the United States have been (...) reluctant to regulate reproductive technologies, however, because their use is politically controversial, they want to whittle down government, some do not consider infertility an illness, and some believe regulation would interfere with the right to reproduce. Yet the unfettered use of reproductive technologies can create such harms as lack of informed consent, providing procedures not medically indicated for financial gain, practice by unqualified personnel, injury to patients and donors, failure to screen donated gametes, and inadequate medical record keeping. Americans place special value on the welfare of children and those who bring them into the world. Such values can outweigh individual procreative liberty when new reproductive technologies are at issue. Although the optimal course would be to establish a regulatory body to govern reproductive technologies, this is not politically feasible now. The newly established National Bioethics Advisory Commission provides a forum in which issues surrounding reproductive technologies should be addressed at this time in the United States. (shrink)

Is it possible to use the courts - or rights instruments - to advance fair access to health care? This article examines this question within the context of the Norwegian public health care system - one special example of the Scandinavian welfare system. In particular, it asks four basic questions: What are the normative justifications for rights to health care? What were the political processes and concerns leading up to the current Patients Rights Act in Norway? (...) What kind of legal status do these rights have? How can rights to access be implemented?Patient rights do not only concern the right to access to health care; they also include the right to information, the right to participate in decision-making, and informed consent. This article examines only the former aspect, the use of the legal system to secure access to prioritized specialized health care services. (shrink)

Human enhancement has emerged in recent years as a blossoming topic in applied ethics. With continuing advances in science and technology, people are beginning to realize that some of the basic parameters of the human condition might be changed in the future. One important way in which the human condition could be changed is through the enhancement of basic human capacities. If this becomes feasible within the lifespan of many people alive today, then it is important now to (...) consider the normative questions raised by such prospects. The answers to these questions might not only help us be better prepared when technology catches up with imagination, but they may be relevant to many decisions we make today, such as decisions about how much funding to give to various kinds of research. Enhancement is typically contraposed to therapy. In broad terms, therapy aims to fix something that has gone wrong, by curing specific diseases or injuries, while enhancement interventions aim to improve the state of an organism beyond its normal healthy state. However, the distinction between therapy and enhancement is problematic, for several reasons. First, we may note that the therapy-enhancement dichotomy does not map onto any corresponding dichotomy between standard-contemporary-medicine and medicineas-it-could-be-practised-in-the-future. Standard contemporary medicine includes many practices that do not aim to cure diseases or injuries. It includes, for example, preventive medicine, palliative care, obstetrics, sports medicine, plastic surgery, contraceptive devices, fertility treatments, cosmetic dental procedures, and much else. At the same time, many enhancement interventions occur outside of the medical framework. Office workers enhance their performance by drinking coffee. Make-up and grooming are used to enhance appearance. Exercise, meditation, fish oil, and St John’s Wort are used to enhance mood. Second, it is unclear how to classify interventions that reduce the probability of disease and death.. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Introduction to the Special Section on Psychedelics Research and TreatmentDominic SistiAgainst a backdrop of post-pandemic malaise, diseases of despair, and a fragmented mental health care system, psychedelics have enjoyed a resurgence of interest as powerful psychotherapeutic agents and as catalysts of personal growth. The true power of these substances—some of which are considered sacramental by Indigenous peoples—has been shrouded for half a century by cultural mythology, political (...) propaganda, and misuse. From about 1940 to 1970, psychedelics including psilocybin and LSD were studied and used by clinicians to treat a range of psychiatric disorders from alcoholism and depression in adults to "autistic schizophrenia" in children.In June 1971, the Nixon administration's racist and illiberal War on Drugs inaugurated what was essentially a total ban on psychedelics. Society was robbed of half a century of scientific progress, and one can only speculate how differently our society might now function, and how many people might have been spared the trauma of mental illness and incarceration. Thankfully, it appears the time has arrived for psychedelic medicines to be decriminalized and included again in the pharmacopeia.In June 2023, a group of psychedelic researchers, therapists, bioethicists, Indigenous scholars, and advocates met at the Banbury Conference Center at Cold Spring Harbor Laboratory. There, this interdisciplinary group discussed several pressing ethical issues in psychedelics research and treatment that continue to [End Page 114] challenge the field. The aim of this meeting was to develop a bioethical framework for the use of psychedelics in mainstream medical settings. That is, how should psychedelics be employed responsibly by everyday clinicians, including psychiatrists, psychologists, social workers, and other behavioral health-care providers? This special section offers a sampling of three topics in psychedelic bioethics raised by the Banbury group, several of whom appear as coauthors.In our first paper, Logan Neitzke-Spruill and colleagues offer an overview of explanatory models describing the therapeutic mechanisms of psychedelic substances and how each of these models generates unique ethical quandaries. Starting from molecular biology and moving to neural circuitry and networks, neurobiological models now propel contemporary scientific research into psychedelics. Knowing how these substances work on a molecular level may offer promising ways forward in the development of new molecules designed to treat serious mental illnesses and other neurologic conditions. Perhaps neuroplastic mechanisms will be harnessed to develop new therapies without necessitating a psychedelic trip—a controversial premise discussed in our third paper, by Katherine Cheung, Brian Earp, and David Yaden.Such "neuroreductionism" risks ignoring the subjective psychological and spiritual experiences of patients that appear to be pivotal in psychedelic-assisted therapy, often described as mystical and utterly transformative. At the psychological level, these substances engender a kind of vulnerability and suggestibility requiring clear ethical standards to ensure patients' psychological and physical safety. And so too, practitioners will need structural and cultural competency to recognize the spiritual or moral values that inspire patient reactions during and after their psychedelic experiences. Ethically informed psychedelic practitioners will have to navigate between disciplinary silos and explanatory models. One practical upshot is the open question of how best to train psychedelic practitioners who hold this broad set of competencies.To that end, well-trained practitioners will need to be able to disclose in some way the transformative properties of psychedelics to prepare patients for their experiences. But how does one describe the ineffable? This raises the question of how or if it is possible for patients to truly consent to the transformative experience elicited by psychedelics, often described as one of the most important experiences of a person's life. The experience might stimulate significant emotional healing, or it might be horrifying. This sounds like a problem uniquely attached to psychedelics: after all, most pharmaceuticals don't trigger changes in one's fundamental moral values, life choices, and commitments, nor are they intended to. Yet, Brent Kious, Andrew Peterson, and Amy McGuire challenge the view that the psychedelic experience is uniquely transformative and impervious to the disclosure requirements of informed consent, a bedrock of bioethics. Ultimately, the writers show how consent is possible even if the experiences are dramatically different from most medical interventions, endorsing a practical view of consent [End... (shrink)

The Health (Regulation of Termination of Pregnancy) Act 2018 was commenced on 01/01/2019 in Ireland. The Act provides for legal termination of pregnancy under defined circumstances including for any reason at < 12 weeks gestation; and where two doctors agree there is ‘a condition affecting the foetus that is likely to lead to the death of the foetus either before, or within 28 days of, birth’. As such, abortion for congenital anomaly (CA) can occur at a number of time points, (...) depending on the adjudged severity. Infants born with CAs frequently require significant medical intervention and account for a high proportion of admissions to paediatric intensive care units (PICUs). The purpose of this paper was to evaluate the number of infants with CAs admitted to an Irish PICU in the period before and after the implementation of the Act. All PICU admissions < 1 month of age to a single Irish paediatric hospital between 2012 and 2021 were analysed. CAs were recorded, and the periods before and after the commencement of the Act compared. We found a difference in admissions involving CAs, particularly those related to congenital heart disease involving single ventricle anatomy. It is plausible that this difference was as a result of improved access to abortion services following the implementation of the Act. This article explores the legal conditions related to the abortion of a foetus with a CA in Ireland, and the possible impact of the Independent Review of the Operation of the Health ( Regulation of Termination of Pregnancy) Act 2018. (shrink)

Immunological mechanisms and therapy approaches in psychotic syndromes were recently supported by the discovery of autoantibody-associated limbic and non-limbic encephalitis. However, how clinical diagnostic procedures in psychiatry should be adapted to these new insights is still unclear. In this study, we analyzed the cerebrospinal fluid (CSF) and neuroimmunological alterations and their association with cerebral MRI (cMRI) and electroencephalographic (EEG) findings. From 2006 until 2013, we acquired 180 CSF samples from psychotic patients. Between 2006 and 2009, CSF examinations were only (...) performed in cases in which organic brain disease was suspected. Since then, this procedure has been integrated into our routine diagnostic workup. CSF basic diagnostics were supplemented by measuring antineuronal antibodies against intracellular synaptic antigens, antibodies against intracellular onconeural antigens, antibodies against neuronal cell surface antigens and thyroid antibodies. In addition, cMRIs and EEGs were conducted. We found white cell counts elevated in 3.4% of the cases, albumin quotient elevated in 21.8%, and protein concentration elevated in 42.2%. Evidence of intrathecal immunoglobulin synthesis was found in 7.2% of the cases. Antibodies measured against neuronal cell surface antigens were positive in 3.2%. Reactivity on antibodies against intracellular onconeural antigens were detected in 3.5%. Serum thyroid antibodies were elevated in 24.7%. Abnormalities were found in 39.5% of cMRIs and in 34.3% of EEGs. The main finding of our study was the high prevalence of CSF and autoantibody abnormalities in 54.4% of psychotic patients. In combination with cMRIs and EEGs, 75.6% showed abnormal findings. Our results are discussed with regard to the concept of immunological encephalopathy. Future studies should analyze the efficacy of immunomodulatory therapies. (shrink)

Background As a number of commentators have noted, SARS exposed the vulnerabilities of our health care systems and governance structures. Health care professionals (HCPs) and hospital systems that bore the brunt of the SARS outbreak continue to struggle with the aftermath of the crisis. Indeed, HCPs – both in clinical care and in public health – were severely tested by SARS. Unprecedented demands were placed on their skills and expertise, and their personal commitment to their profession was (...) severely tried. Many were exposed to serious risk of morbidity and mortality, as evidenced by the World Health Organization figures showing that approximately 30% of reported cases were among HCPs, some of whom died from the infection. Despite this challenge, professional codes of ethics are silent on the issue of duty to care during communicable disease outbreaks, thus providing no guidance on what is expected of HCPs or how they ought to approach their duty to care in the face of risk. Discussion In the aftermath of SARS and with the spectre of a pandemic avian influenza, it is imperative that we (re)consider the obligations of HCPs for patients with severe infectious diseases, particularly diseases that pose risks to those providing care. It is of pressing importance that organizations representing HCPs give clear indication of what standard of care is expected of their members in the event of a pandemic. In this paper, we address the issue of special obligations of HCPs during an infectious disease outbreak. We argue that there is a pressing need to clarify the rights and responsibilities of HCPs in the current context of pandemic flu preparedness, and that these rights and responsibilities ought to be codified in professional codes of ethics. Finally, we present a brief historical accounting of the treatment of the duty to care in professional health care codes of ethics. Summary An honest and critical examination of the role of HCPs during communicable disease outbreaks is needed in order to provide guidelines regarding professional rights and responsibilities, as well as ethical duties and obligations. With this paper, we hope to open the social dialogue and advance the public debate on this increasingly urgent issue. (shrink)

BackgroundThe literature shows the negative psychological impact of the coronavirus disease 2019 outbreak on frontline healthcare workers. However, few are known about the mental health of physicians and nurses working in general hospitals during the outbreak, caring for patients with COVID-19 or not.ObjectivesThis survey assessed differences in mental health in physicians and nurses working in COVID-19 or non-COVID-19 medical care units.DesignA cross-sectional mixed-mode survey was used to assess burnout, insomnia, depression, anxiety, and stress.SettingA total of 1,244 physicians and (...) nurses from five general hospitals in Belgium, working in COVID-19 care units, non-COVID-19 care units, or both were informed of the study.ParticipantsSix hundred forty-seven healthcare workers participated in the survey.MeasurementsValidated instruments were used to assess the outcomes: the PFI, the ISI, and the DASS-21.ResultsResults showed high prevalence of burnout, insomnia, depression, and anxiety among participants. After adjusting for confounders, multivariate analysis of variance showed no differences between CCU, NCCU, and CCU + NCCU workers. Univariate general linear models showed higher level of burnout, insomnia, and anxiety among nurses in comparison to physicians. Being a nurse, young, isolated, with an increased workload were risk factors for worse mental health outcomes.LimitationsThe mental health of the tested sample, before the outbreak, is unknown. Moreover, this cross-sectional design provides no information on the evolution of the mental health outcomes over time.ConclusionDirectly caring for patients with COVID-19 is not associated with worse mental health outcomes among healthcare workers in general hospitals. High prevalence of burnout, insomnia, depression, and anxiety among physicians and nurses requires special attention, and specific interventions need to be implemented.Protocol RegistrationClinicalTrials.gov, identifier NCT04344145. (shrink)

Interdisciplinary hospital ethics committees have been the most common response to the mandates for ethical review procedures set forth by the Joint Commission for the Accreditation of Health Care Organizations, the American Hospital Association, and within institutions themselves. A 1989 national survey reported that 60% of hospitals had ethics committees. However, little is still known about the current state of these committees in hospitals, their composition, what functions are performed, or what issues are discussed.

The Infectious Diseases Act entered into force officially on 14 November 2018 in Bangladesh. The Act is designed to raise awareness of, prevent, control, and eradicate infectious or communicable diseases to address public health emergencies and reduce health risks. A novel coronavirus disease was first identified in Bangladesh on 8 March 2020, and the Ministry of Health and Family Welfare issued a gazette on 23 March, listing COVID-19 as an infectious disease and addressing COVID-19 as a public health (...) emergency. The gazette empowers the government to monitor the spread of infection. Despite there being an infrastructure of research ethics committees in almost all hospitals in Bangladesh, a lack of such committees in the clinical setting often forces healthcare professionals to allocate scarce healthcare resources to the task. These personnel are often either influenced by materialistic matters or guided by the emergency policies, without reaching a consensus on how to allocate scarce resources in times of need, especially in the time of the COVID-19 pandemic. Ethical dilemmas often arise when a number of patients with COVID-19, especially in poor and middle-class areas, are denied care while elites are prioritized to receive such scarce resources. Resource allocation in healthcare during the COVID-19 pandemic in Bangladesh appears to be unethical and in direct conflict with the biomedical principles of non-maleficence and procedural justice. The findings of this study suggest that the Act needs substantive changes in the stipulation of policy directing hospitals in the provision of resource allocation framework. Furthermore, parliament should produce guidance outlining how to successfully implement the law with the aim of protecting public health in times of emergency, especially the COVID-19 pandemic. (shrink)

Several times each month, usually on a Thursday morning, I join one or more of my physician colleagues on teaching rounds. Most weeks these are traditional rounds, where an attending physician leads a group of medical students, residents, and clinical fellows from bed to bed reviewing charts, examining patients, and planning daily procedures. As a medical ethicist, my role is to discuss some of the ethical issues that are embedded in these decisions about medical care and help students (...) to hone the skills required to manage these issues successfully in the context of ongoing care.Although the clinical setting varies, questions of patient management are always at the center of teaching rounds. Since my training is in philosophy, and not in medicine or nursing, there have been occasions when this focus on patient care has prompted me to reflect upon my role as a medical ethicist in these contexts. Lacking even the most basic medical training, and having been remarkably fortunate in having had limited personal experiences as a patient, what can I possibly contribute to the training of physicians?I suspect that at some time or another most teachers, but perhaps especially those trained in the humanities, have moments when they question the usefulness of their teaching. In my case, by introducing perspectives from the humanities on teaching rounds, my hope is to add some balance to the often narrow focus on the ordering of diagnostic tests, scheduling of procedures, obtaining of patient consent, and other practical matters. I often stress, for example, how the patients with whom students and residents interact are not mere patients, but persons with lives outside the hospital that can be made profoundly better or worse as a result of the brief time they are seen in the hospital. I draw attention to the …. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Experiences of the Live Organ Donor: Lessons Learned Pave the FutureDianne LaPointe RudowIntroductionThe experience of a live organ donor is multi–faceted and is as unique as each person who agrees to take a risk to save another. Factors include: type of organ donated (kidney vs. liver), relationship to the recipient (related—biological or non–biological vs. non–related), decision–making and motivation for donation, support systems available within and outside of the transplant (...) program, and outcomes of the donation for both recipient and donor. The variety of experiences is apparent in the narratives within this special issue. I want to thank the authors of each story for sharing their experiences of the live donation process. As difficult as it must have been to write, it was difficult for someone like me, a transplant professional who is a strong advocate for quality donor care, to hear. But with each success and failure of transplantation, we can learn in the hopes of improving things for the next.Despite the fact that the field of transplantation is over 50 years old and the first kidney donors were live donors, viewing the field of live donation as a subspecialty of transplantation is a new concept (LaPointe Rudow, 2011). Live donation is, in fact, as specialized as lung transplant, liver transplant, transplant infectious disease, and kidney transplant. All of those subspecialties have clinicians and researchers with expertise in the area. Live donation experts exist and teams of live donor professionals staff most transplant programs today. Additionally regulatory bodies, professional societies, and advocacy groups strive to improve the care of the live organ donor (Medicare Conditions of Participation, 2007; Organ Procurement and Transplant Network, 2011; National Kidney Foundation 2011). Many years have been spent perfecting the surgical procedure and refining the proper testing to ensure that donation is safe for the donor. Live donation is, however, more than a surgery; in recent years, transplant professionals acknowledge that the psychosocial impact of donation on donors, whether positive or negative, can be significant but it is not yet completely understood.Much debate has occurred as to the components of the psychosocial evaluation, length and type of follow up, and the role of the independent live donor advocate (Amsterdam Forum, 2005; Ommen et al. 2011; Pruett et. al. 2006; Schroder et. al. 2008; Simpson & Pomfret 2012). The ethical concepts of paternalism and autonomy are in tension as we attempt to justify live donation. Perhaps nowhere else is ethical deliberation more vigorous than in the debate regarding whether informed consent for live donation is attainable, driven largely by the plight of the patient and the consequent vulnerability of the donor in an effort to help the patient. These quandaries are illustrated in the compelling narratives of this special issue. [End Page 45]Narrative ThemesBased on an analysis of the narratives, I will present a series of dominant themes that emerged from the stories; these will be exemplified by illustrative quotations from the live donor’s narratives.Live Donation has Psychological Effects on the DonorThere are many psychological effects of live donation both pre–and post–donation. The narratives describe feelings such as “I felt like a hero,” “feelings of anxiety, anger and ambivalence,” “it’s the best thing I ever did,” “I would do it all over again,” “a sense of loss,” and feelings of “suicidal thoughts.” The dichotomy of feelings expressed demonstrates the uniqueness of the live donor experience. One donor has nothing but good things to report regarding his or her experience while another feels lasting ill emotional affects requiring ongoing counseling even though the recipient has done well.Pre–donation psychological issuesTraditionally, the psychosocial evaluation explores the pre–donation emotional and family stressors to ensure that there are no issues or underlying psychiatric disorders that will make donation high risk for psychological complications. All donors writing the narratives were found to be suitable donors. That being said, there is no standardized approach to the psychological evaluation. Organ Procurement and Transplant Network (OPTN)/United Network for Organ Sharing (UNOS) (Organ Procurement and Transplant Network, 2011) have policies and guidelines and the Centers for Medicare Conditions of Participation (COP) (Medicare Conditions of... (shrink)

Objective: The objectives of this study are to understand the current functions, structure and operation of hospital ethics committees (HECs) in Shanghai and to facilitate their improvement. Methods: (1) A questionnaire survey, (2) interviews with secretaries and (3) on-site document reviews of HECs in Shanghai were used in the study, which surveyed 33 hospitals. Results: In Shanghai, 57.56% of the surveyed hospitals established HECs from 1998 to 2005. Most HECs used bioethical review of research involving human subjects as (...) well as bioethical review or consultation regarding medical care services and administrative decision- making. Of the surveyed HECs, 14.3% did not provide any formal bioethical training to the HECs’ members and many HECs had no standard operating procedures. Some HECs had no clear definition of what was “conflict of interest” that should be considered by the HECs, while 44.4% of the HECs did not perform continuing review. Discussion: After the issues of related national regulations, more and more hospitals established HECs in Shanghai, but the functions of HECs need to be further developed and formal training on bioethics should be provided to HEC members. To assure the independence and good performance of HECs, the conflict of interest procedure, the standard operating procedures and bioethical review should be improved. Conclusion: HECs in Shanghai had developed in the preceding 10 years and they played great roles in protecting the rights and welfare of human subjects and patients; some areas need improvement. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 11.2 (2001) 165-168 [Access article in PDF] UPMC Presbyterian Policy and Procedure Manual Guidelines for Disclosure and Discussion of Conditions and Events with Patients, Families and Guardians* I. Introduction and Background In the course of hospital care, an extensive amount of clinical information is generated. It includes diagnostic findings, treatment options, responses to interventions, and professional opinions. The information can be positive or (...) negative. Clinical events may or may not be caused by clinicians and consequently may be iatrogenic (caused by medical treatment), nosocomial (occurring in the hospital) or natural events.In accordance with the informed consent policy (#4011), Patients' Bill of Rights (# 0154, Section II H), and the Guidelines on Forgoing Life Sustaining Treatment (#4007), patients have the right to information regarding their condition and care. Physicians and other caregivers are obligated to provide accurate information as expeditiously as possible. While it is usually easy to provide positive information, negative information is more difficult to disclose, especially when the cause is iatrogenic."Therapeutic privilege" has been invoked to explain why certain negative information might be withheld. By invoking therapeutic privilege, the physician refrains from full disclosure to protect the patient from the effects of receiving the information itself. The use of therapeutic privilege is increasingly being called into question because it decreases patient autonomy and reduces trust.The following recommendations are provided to clinicians to help guide delivery of sensitive information, positive and negative. Specific recommendations [End Page 165] are provided for situations where the information is about an unfavorable or adverse event, or where the information might best be characterized as "bad news." II. Definitions Unfavorable event or unfavorable condition. For the purposes of these guidelines, an unfavorable condition is an occurrence or diagnosis that results in or is likely to result in a significant negative outcome, and/or a significant alteration in the care plan.An unfavorable event in this context is not the same as a sentinel event, which in policy #4025 is defined as, "a serious, unexpected, adverse patient event which has resulted in, or if repeated would have a significant probability of resulting in, loss of life or serious physical or psychological injury, that is judged to be a warning of an underlying problem involving hospital facilities, policies, procedures, systems or personnel."Adverse Event. An unfavorable event for the purposes of these guidelines is also distinguished from the FDA definition of the term "adverse event", which is a reportable negative effect of a drug or device potentially resulting in death, hospitalization, or medical or surgical intervention. (See policy #4022 Safe Medical Device Act.)Examples of unfavorable events or conditions for the purpose of these guidelines include a new diagnosis of cancer, a perioperative myocardial infarction, or unintended delivery of an incorrect medication that results in clinical change.Examples of events not covered by these guidelines are intravenous saline infiltration and medication dosing errors that have no clinical impact on care.Iatrogenic. Event caused by the treatment of a healthcare provider. III. Guidelines and Principles It is appropriate that UPMC Presbyterian support basic principles for patient and family notification regarding all clinical events and conditions, including unfavorable ones. Physicians must be honest because that is a cornerstone of the patient-physician relationship, and because it fosters patient autonomy.UPMC Presbyterian supports the following AMA position regarding patient information: [End Page 166] It is a fundamental ethical requirement that a physician should at all times deal honestly and openly with patients. Patients have a right to know their past and present medical status and to be free of any mistaken beliefs concerning their conditions. Situations occasionally occur in which a patient suffers significant medical complications that may have resulted from the physician's mistake or judgement. In these situations, the physician is ethically required to inform the patient of all the facts necessary to ensure understanding of what has occurred. Only through full disclosure is a patient able to make informed decisions regarding future medical care. Ethical responsibility includes informing patients of changes in their diagnoses... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Basic Resources in Bioethics*Mary Carrington Coutts (bio)OrganizationsKennedy Institute of Ethics Georgetown University Washington, DC 20057 National Reference Center for Bioethics Literature 800-MED-ETHX or 202-687-3885The Hastings Center 255 Elm Road Briarcliff Manor, NY 10510 914-762-8500Society for Health and Human Values 6728 Old McLean Village Drive McLean, VA 22101 703-556-9222NOTE: There are numerous organizations in the United States and abroad that deal with bioethical issues. For a more comprehensive listing (...) of those organizations, see:American Hospital Association. Directory of Biomedical Ethics Organizations. Chicago: American Hospital Association, 1989.National Reference Center for Bioethics Literature. International Directory of Bioethics Organizations edited by Robert Iosco. Washington, DC: Georgetown University, 1986.Encyclopedia and DictionaryDictionary of Medical Ethics. Edited by A.S. Duncan, G.R. Dunstan, and R.B. Welborn. New rev. ed. New York: Crossroad, 1981. [End Page 75]Encyclopedia of Bioethics. Edited by Warren T. Reich. 4 vols. New York: Macmillan-Free Press, 1978; or 1982 reprint in 2 volumes available to members of the Kennedy Institute of Ethics through the membership office, 202-687-8099.Online DatabaseBioethicsline. Produced by the Kennedy Institute of Ethics for the National Library of Medicine. Searchable through the MEDLARS system. Focuses on questions of ethics and public policy in the fields of health care and biomedical research. Searches available upon request to the National Reference Center for Bioethics Literature. For information on securing a personal access code from the National Library of Medicine, call 800-638-8480.BibliographiesBibliography of Bioethics. Edited by LeRoy Walters and Tamar Joy Kahn. Washington, DC: Kennedy Institute of Ethics, Georgetown University. Issued annually since 1975. Corresponds to the BIOETHICSLINE database. Provides references to resources on ethical and public policy issues in medicine and biomedical research. Includes abstracts; arranged by broad subject categories.Ethics in Nursing. Edited by Terry Pence. 2nd ed. New York: National League for Nursing, 1986. An annotated bibliography of nursing ethics. Includes author and subject indexes.Goldstein, Doris M. Bioethics: A Guide to Information Sources. Detroit: Gale Research, 1982. A selected, annotated bibliography to the literature of bioethics.The Hastings Center's Bibliography of Ethics, Biomedicine and Professional Responsibility. Compiled by the staff of the Hastings Center. Frederick, MD: University Publications of America, 1984.Medical Ethics: An Annotated Bibliography. Edited by Mark Siegler, Peter A. Singer and David L. Schiedermayer. Philadelphia: American College of Physicians, 1988.Current Awareness ServicesNOTE: Several journals have sections where they highlight new publications. See, for example, the "In The Literature" section of the Hastings Center Report, or the "Medicolegal Reference Shelf" section of Law, Medicine and Health Care. Other services include:BioLaw. Edited by James F. Childress and Ruth D. Gaare. Frederick, MD: [End Page 76] University Publications of America, 1983 to present. Annual with bimonthly updates. (Previous title: Bioethics Reporter.) A compendium of articles and legal documents on ethical and legal issues in medicine, health care administration and human experimentation. Includes the text of important legal decisions in the Resources section.New Titles in Bioethics. Edited by Luanda Fitch Huttlinger. Washington, DC: National Reference Center for Bioethics Literature, Kennedy Institute of Ethics, Georgetown University. Published monthly 1975-1989; quarterly 1990—present. List of acquisitions by the National Reference Center for Bioethics Literature. Organized by subject categories. Includes ordering information for difficult-to-find items. Annual cumulation available.Scope Notes Series. Washington, DC: National Reference Center for Bioethics Literature, Kennedy Institute of Ethics, Georgetown University. A series of issue briefs including annotated bibliographies on the following popular bioethical topics:No 1. Dangerousness, September 1982, 5 p.No 2. Living Wills and Durable Powers of Attorney: Advance Directive Legislation and Issues, Revised February 1990, 15 p.No 3. Ethics Committees in Hospitals, Revised June 1989, 12 p.No 4. Diagnosis Related Groups and the Prospective Payment System, June 1984, 11 p.No 5. Baby Fae, January 1985, 19 p.No 6. Surrogate Mothers, Revised January 1988, 12 p.No 7. Withholding or Withdrawing Nutrition or Hydration, Revised September 1988, 12 p.No 8. AIDS: Law, Ethics and Public Policy, April 1988, 12 p.No 9. Bioethics Audiovisuals 1982 to Present, September 1988, 12 p.No 10. Ethical Issues in... (shrink)

To say health is 'special' is to say that it has a moral significance that differentiates it from other goods (cars, say or radios) and, as a matter of justice, warrants distributing it separately. In this essay, I critique a new justification for the specialness thesis about healthcare (STHC) recently put forth by Engster. I argue that, regrettably, Engster's justification of STHC ultimately fails and fails on much the same grounds as have previous justifications of STHC. However, I also argue (...) that Engster's argument still adds something valuable to the debate around STHC insofar as it reminds us that the moral significance of healthcare may be wider than simply its effect on the incidence of disability and disease: one further reason we may think healthcare is morally significant is because it concerns the treatment and care of those who are already unwell. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Human Gene TherapyMary Carrington Coutts (bio)On September 14, 1990, researchers at the U.S. National Institutes of Health (NIH) performed the first approved gene therapy procedure on a four-year-old girl named Ashanti DeSilva. Born with a rare genetic disease, severe combined immune deficiency (SCID), Ashanti lacked a healthy immune system and was extremely vulnerable to infection. Children with SCID usually develop overwhelming infections and rarely survive to adulthood; even a (...) common childhood illness like chicken pox is life-threatening. Ashanti led a cloistered existence, avoiding contact with people outside her family, remaining in the sterile environment of her home, and battling frequent illnesses with massive amounts of antibiotics.In Ashanti's gene therapy procedure, her own white blood cells were genetically modified and then infused back into her bloodstream. Laboratory tests show that the therapy has strengthened Ashanti's immune system. She no longer has recurrent colds, has been allowed to attend school, and has been immunized against whooping cough. This gene therapy procedure is not a cure, however. The genetically-treated white blood cells only survive for a few months and must then be replaced, but Ashanti's future is much brighter because of the new therapy (VI, Thompson [The First] 1993).Although this simplified description of Ashanti's gene therapy procedure sounds like a happy ending, it is little more than an optimistic chapter in a long story. The road to the first approved gene therapy procedure was rocky and fraught with controversy. The biology of human gene therapy is very complex, and there are still many techniques that need to be developed and diseases that need to be understood more fully before gene therapy is well established. The public policy debate surrounding the possible use of genetically engineered material in human subjects is equally complex. Major participants in the debate come from the fields of biology, government, law, medicine, philosophy, politics, and religion, each bringing different views to the discussion.In studying the ethics of gene therapy, one should draw a distinction between [End Page 63] therapy on somatic (non-reproductive) cells and germ (reproductive) cells. Only the germ cells carry the genes that will be passed on to the next generation. Reactions to gene therapy have varied widely. Some commentators on gene therapy object to any form of genetic manipulation, no matter how well-intentioned (VI, Rifkin 1983). Another reaction is to allow the use of somatic-cell therapy, but not to approve the use of germ-line therapy, which could have unforeseeable effects on future generations. A different stance is that, with proper regulation and safeguards, germ-line gene therapy is a logical extension of the progress made to date and that it is an ethically acceptable procedure.TechniquesTo date, 43 research protocols have been approved for somatic-cell gene therapy in the United States. The techniques employed in each protocol vary, but in general a virus is used as a "vector" to insert the desired gene into the DNA of the patient's cells, in order to compensate for a defective gene. For Ashanti's gene therapy, this technique involved obtaining white blood cells and introducing properly functioning genes into as many of the cells as possible. The normal genes were delivered through the use of a specially-engineered virus.Although similar techniques are used in germ-line gene therapy, the procedure is more difficult. There are two basic ways to perform germ-line gene therapy: (1) to treat a preimplantation embryo that carries a serious genetic defect before its implantation in the mother, which necessitates the use of in vitro fertilization techniques; or (2) to treat the germ cells (sperm or egg cells) of afflicted adults so that the genetic defects would not be passed on to their offspring, which requires the technical expertise to delete the defective gene and insert a properly functioning replacement. Because of the complexity of the procedures involved and the attendant ethical controversy, germ-line therapy is not currently performed.Candidate Diseases for Gene TherapyAt present, gene therapy is likely to be most successful in treating diseases that are caused by single-gene defects and has been approved for treating diseases such... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Patient Self-Determination ActElizabeth Leibold McCloskey (bio)What are the ethics of extending the length of life? We know that we cannot artificially end life (Thou Shalt not Kill), but how about artificially extending life? Is that always good, sometimes good?... In ethics, is keeping people alive the highest good? Should our priority be to keep people breathing?... What does basic religious ethics say about this?(John C. Danforth, letter (...) to the author, 19 August 1989)The Patient Self-Determination Act, signed into law as part of the Omnibus Budget Reconciliation Act of 1990 (OBRA '90) last November, marks the first time that Congress has passed legislation concerning the ethics of life-sustaining medical treatment. The bill was spearheaded by Senator John C. Danforth (RMO), who has a special interest in this area. An Episcopal priest, Danforth was formerly an assistant chaplain at New York's Memorial Sloan-Kettering Cancer Center and now sits as a senior member of the Senate Finance Committee, which oversees Medicare and Medicaid. Although Senator Danforth's legislative initiative was not a result of the Cruzan case, it was in his state of Missouri that the U.S. Supreme Court case involving removal of Nancy Cruzan's feeding tube arose (Cruzan v. Director of Missouri Department of Health, U.S. Supreme Court, 58 LW 4916, 26 June 1990). From his unique vantage point, he felt it was time to craft a legislative response to some of the difficult issues surrounding prolongation of life.The short answer to Senator Danforth's questions about when to artificially extend life is simple enough: people must be free to determine that for themselves. Common law and common sense dictate such a conclusion; living will and health care proxy statutes, enacted in almost every state, codify that right. The Catholic moral tradition teaches that one is not morally obligated to use extraordinary means to prolong life, a tradition shared both by the mainline Protestant and the reform and conservative Jewish community. Yet most people are unaware of their fundamental legal right to make such decisions, and as court cases from Quinlan (In re Quinlin, 137 N.J. Super. 227, 1975) to Cruzan demonstrate, few know [End Page 163] how to make arrangements for this right to be exercised if they become incapacitated.Meanwhile, health care practices are often driven by a denial of death. When Senator Danforth and Senator Daniel Patrick Moynihan (D-NY) introduced the bill on October 17, 1989, Senator Danforth said:More and more it is arguable that we play God by subjecting people to unwanted and sometimes unnecessary treatment, treatment that unnaturally prolongs the dying process. Our health care system has become obsessed with extending life, at times neglecting the caring component of medicine and trampling on the rights of patients.(Congressional Record 1989, 135:5.13566)The American Hospital Association estimates that 70 percent of deaths now occur after a determination to withhold or withdraw medical treatment. Many of those decisions are made without the benefit of an incapacitated patient's views, yet a Harvard study revealed that 95 percent of the population would like to prepare in advance for such decisions. Only 4 percent of hospitals have a systematic method of asking patients if they have an advance directive. Family members confront painful choices in the face of uncertainty about their loved one's wishes and it can be even more painful when a family knows the patient's desires but providers and the courts act otherwise because clear evidence is lacking.The Patient Self-Determination Act is rooted in the belief that people should be given information that enables them to specify the extent of medical treatment they wish to receive should they become incapacitated. The public should be educated about applicable state laws that protect the individual's right to make such choices through the use of an advance directive.The Act moves toward that goal by promoting knowledge of state laws. It requires every hospital, nursing home, home health agency, hospice, and health maintenance organization that participates in Medicaid or Medicare to routinely give all adult patients information about advance directives. Patients will also be given information on the... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Office of Scientific IntegrityDavid P. Hamilton (bio)For most of the 1980s, the specter of scientific fraud popped into public view every few years, usually only to submerge again. Faced with several well-publicized cases of scientists who blatantly faked their data—among the best-known being Harvard cardiologist John Darsee (whose colleagues watched him forge data) (Broad and Wade 1982, p. 14) and Sloan-Kettering Institute immunologist William Summerlin (who painted black (...) spots on white mice to simulate tissue grafts) (Broad and Wade 1982, p. 155)—the scientific community as a whole tended to dismiss the phenomenon as the work of a few deviants. Called in 1981 to testify before then-Representative Albert Gore Jr.'s subcommittee on investigations and oversight, Philip Handler, then-president of the National Academy of Sciences, told the panel that science was perfectly capable of regulating itself, and that the problem of scientific fraud had been "grossly exaggerated" by the press (Broad and Wade 1982). The message was clear: Congress should stick to its knitting, and science would take care of itself.Now, however, scientists are faced with a very different situation: a permanent federal bureaucracy, known as the Office of Scientific Integrity (OSI), devoted to the investigation of alleged scientific wrongdoing. The transition from the days of laissez-faire, when universities were entrusted with all investigations unless they were handled so badly that the federal government was forced to take notice, has been an uncomfortable one for many researchers. Lately, this discomfort has taken shape as a vocal protest against OSI. Largely as a result of this protest, federal officials recently promoted a plan to restructure OSI and change some of its operating procedures, a move with unpredictable consequences for universities and researchers alike.OSI was born largely because of investigations by two influential congressmen: Representatives John Dingell of Michigan and Ted Weiss of New York. While both claimed they acted mainly to make sure taxpayer dollars were not spent on fraudulent research, both also maintained a strong interest in protecting "whistleblowers," the often vulnerable, and usually junior, scientists who first raise questions about bad research. And Dingell seemed to take special pleasure in pointing up the deficiencies of investigations run by universities and by the National Institutes of Health (NIH) itself. (For reasons that are not well understood, [End Page 171] biomedical research seems far more prone to fraud than any other field of science. As a result, NIH, which funds most biomedical research in the United States, has held ultimate responsibility for most prominent cases of fraud.) Plagued as they often were by conflicts of interest, shoddy methodologies, and, in some cases, a willingness to believe any excuse by the accused, no matter how far-fetched, these investigations made easy targets. And the notion that science could "govern itself" grew harder to sustain.In late 1988, Dingell and other congressmen began circulating draft bills that would have created a new office for investigating scientific fraud. Dingell would have placed such an office under the aegis of the Inspector General of the Department of Health and Human Services, raising the possibility that scientific fraud might be probed by the same criminal investigators who unravel Medicare fraud. Unsettled by this vision of the "science police," NIH officials moved quickly to pre-empt Congress. On March 16, 1989, they published a notice in the Federal Register announcing the creation of OSI, an office with responsibility for ensuring thorough university investigations of misconduct and the authority to conduct its own investigations when necessary.From the beginning, OSI took an unusual approach to its work. For one thing, the office had a broad mandate: Although located within NIH, it was responsible for research funded throughout the entire Public Health Service, including the Food and Drug Administration, the Alcohol, Drug, and Mental Health Administration, and the Centers for Disease Control. Furthermore, it was not restricted to scientific fraud. Departmental lawyers, wishing to avoid the legal connotations of the term "fraud"—in particular, a requirement that fraudulent actions not only mislead others but also cause them noticeable harm—decided instead to adopt the term "scientific misconduct," defined as "fabrication, falsification, plagiarism, or other practices that deviate... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Ethics Committees in HospitalsPat Milmoe McCarrick (bio)(Literature about hospital ethics committees has grown enormously since Scope Note 3 first appeared. This update provides new information about resources and documents now available while continuing to include important earlier sources.)Hospital ethics committees increasingly have taken hold in the United States since 1983, when the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research encouraged their (...) creation in its report, Deciding to Forego Life-Sustaining Treatment (III, 1983, p. 5).The President's Commission report (pp. 160-64) suggested the following roles for ethics committees: 1) review of treatment decisions made on behalf of incompetent, terminally ill patients; 2) review of medical decisions having ethical implications with the option, in cases of disagreement, to refer cases to a court with proper jurisdiction; 3) provision of social, psychological, spiritual, or other counseling for patients, family members, physicians, or other hospital staff; 4) establishing guidelines regarding treatment or other medical decisions; and 5) sponsoring or conducting educational programs to inform all concerned, including the public, about ethical problems in medicine.No exact count of these committees is available. According to estimates cited by Donald F. Phillips, managing editor of Hospital Ethics, about two-thirds to three-fourths of hospitals with more than 200 beds have ethics committees, as do about one-third of hospitals under 200 beds. He thinks that about half of the 6,000 hospitals in the United States now have working ethics committees.Several journal articles and a court decision in the late 1970s influenced their formation. A 1975 journal article by pediatrician Karen Teel (VII A) urged the use of hospital ethics committees to provide for dialogue in individual care situations as an appropriate sharing of responsibility. Another early article suggested that beyond parents and treating physicians, a "disinterested," mixed lay and medical committee could consider cases about defective newborns to improve the ethical decisionmaking process (VII A, Robertson and Fost, 1976). Three 1977 discussions in the Hastings Center Report highlighted this new concept (VII A, Levine; Shannon; Veatch).Produced at the National Reference Center for Bioethics Literature, Kennedy Institute of Ethics, Georgetown University, Washington, DC 20057. It is supported by funds provided under grant number LM04492 from the National Library of Medicine, National Institutes of Health. Literature available through June 1992 is represented in this Scope Note. [End Page 285]The court decision was the March 31, 1976 ruling by the New Jersey Supreme Court in the Karen Quinlan case. The parents of a young woman in a persistent vegetative state had requested that she be taken off a respirator. The court designated a "prognosis" role for the hospital ethics committee and stipulated that the committee must concur that the patient will never return to a "cognitive, sapient state" before the life-support system can be withdrawn (In the Matter of Karen Quinlan, 70 N.J. 10, 355 A.2d 647, cert. denied sub nom. Garger v. New Jersey, 429 U.S. 922 (1976)). Shortly after the Quinlan decision, Massachusetts General Hospital's Clinical Care Committee created an ad hoc subcommittee (a psychiatrist, a legal counsel, an ICU nurse, an oncologist/internist, a surgeon, and a lay person who had recovered from serious cancer disease) which looked at 15 cases. Based on the subcommittee's success, establishment of a permanent committee to review treatment of the terminally ill was recommended by the critical care committee (VII A, Clinical Care Committee 1976).In its 1984 Baby Doe rules, the federal government recommended establishment of infant care review committees, which promoted the growth of hospital ethics committees (VII C, Povar 1991). In July 1987 Maryland became the first state to require by law that hospitals establish patient care advisory committees to offer advice about choices available in the care of life-threatening illnesses; this requirement was extended to nursing homes in 1990 [codified as amended at Md. Health-Gen. Code Ann. Sections 19-370 to -374 (1990)] (VII C, Hollinger 1991).Recently the role for these committees has been noted in the Accreditation Manual for Hospitals, 1992 Supplement (p. 10, Patient Rights, Section RI. 1.1.6.1) of the Joint Commission... (shrink)

We intuitively think and talk about health care as a human right. Moreover, we tend to talk about health in the language of basic rights or human rights without a clear sense of what such rights mean, let alone whose duty it is to fulfill them. Additionally, in the care ethics literature, we tend to think of a dividing line between care and justice. In this dissertation I aim to draw care and justice together in (...) what I call care justice. To attend to care justice requires the reconceptualization of the value and practice of health care, and of the moral communities in which we enact care and justice. First, I argue for a strong right to health care, though not to health. Second, I argue that health care includes much more than mere medical care. On this account health care is special for the practices of care it values and communicates. Third, I establish a theoretical framework for why, and importantly how, health care entails other forms of care: social, economic and political. My approach engages a complicity framework to rethink moral community formation and participation, and the rights and responsibilities of individuals as participants in a collective moral community. I argue that it is within communities of membership, which I define as ethical homes, that we have duties to and expectations from others. The moral community as complicit ethical home provides a way to reimagine individual shared responsibility within moral communities, and particularly regarding responsibility for practices of care. (shrink)

In this book I show that science suffers from a damaging but rarely noticed methodological disease, which I call rationalistic neurosis. It is not just the natural sciences which suffer from this condition. The contagion has spread to the social sciences, to philosophy, to the humanities more generally, and to education. The whole academic enterprise, indeed, suffers from versions of the disease. It has extraordinarily damaging long-term consequences. For it has the effect of preventing us from developing traditions and institutions (...) of learning rationally devoted to helping us learn how to make progress towards a wiser, more civilized world. On our fragile earth, overcrowded, fraught with injustice, inequality and conflict, menaced by unprecedented and terrifying technological and industrial means for change and destruction, we urgently need to acquire a little more wisdom and civilization if we are to avoid repeating horrors of the kind suffered by so many during the 20th century (and already suffered by many in the first few years of the 21st century). We can ill afford to have in our hands instruments of learning botched and bungled from the standpoint of helping us learn how to live more wisely. It may seem scarcely credible that something as important as our institutions of learning can suffer from wholesale, structural defects. Why has this not been noticed before? Why have not armies of scientists and scholars appreciated the point and, long ago, put the matter right? The answer will emerge as my argument unfolds. I will show that one of the most damaging features of rationalistic neurosis is that it has built-in methodological and institutional mechanisms which effectively conceal that anything is wrong. But there is also an immediately obvious reason: specialization, and the resulting fragmentation of academia, has resulted in a situation in which hardly anyone takes responsibility for the overall ideals, the overall aims and methods, of academic inquiry. Academics, these days, are specialists, furiously trying to keep abreast of developments in their own specialist fields. They have no time, and no inducement, to lift their eyes from their particular disciplines, and look at the whole endeavour. Science has long been under attack, at least since the Romantic movement. Blake objected to “Single vision & Newton’s sleep” and declared that “Art is the Tree of Life... Science is the Tree of Death”. Keats lamented that science will “clip an Angel’s wings” and “unweave a rainbow”. Whereas the Enlightenment had valued science and reason as tools for the liberation of humanity, Romanticism found science and reason oppressive and destructive, and instead valued art, imagination, inspiration, individual genius, emotional and motivational honesty rather than careful attention to objective fact. Much subsequent opposition to science stems from, or echoes, the Romantic opposition of Blake, Wordsworth, Keats and many others. There is the movement Isaiah Berlin has described as the “Counter-Enlightenment” (Berlin, 1979, ch. 1). There is existentialism, with its denunciation of the tyranny of reason, its passionate affirmation of the value and centrality of irrationality in human life, from Dostoevsky, Kierkegaard and Nietzsche to Heidegger and Sartre (see, for example, Barrett, 1962). There is the attack on Enlightenment ideals concerning science and reason undertaken by the Frankfurt school, by postmodernists and others, from Horkheimer and Adorno to Lyotard, Foucault, Habermas, Derrida, MacIntyre and Rorty (see Gascardi, 1999). The soul-destroying consequences of valuing science and reason too highly is a persistent theme in literature: it is to be found in the works of writers such as D.H. Lawrence, Doris Lessing, Max Frisch, Y. Zamyatin. There is persistent opposition to modern science and technology, and to scientific rationality, often associated with the Romantic wing of the green movement, and given expression in such popular books as Marcuse’s One Dimensional Man, Roszak’s Where the Wasteland Ends, Berman’s The Reenchantment of the World and Appleyard’s Understanding the Present. There is the feminist critique of science and conceptions of science: see, for example, Fox Keller (1984) and Harding (1986). And there are the corrosive implications of the so-called “strong programme” in the sociology of knowledge, and of the work of social constructivist historians of science, which depict scientific knowledge as a belief system alongside many other such conflicting systems, having no more right to claim to constitute knowledge of the truth than these rivals, the scientific view of the world being no more than an elaborate myth, a social construct (see Barnes and Bloor, 1981; Bloor, 1991; Barnes, Bloor and Henry, 1996; Shapin and Schaffer, 1985; Shapin, 1994; Pickering, 1984; Latour, 1987). This latter literature has provoked a counter-attack by scientists, historians and philosophers of science seeking to defend science and traditional conceptions of scientific rationality: see Gross and Levitt (1994), Gross, Levitt and Lewis (1996), and Koertge (1998). This debate between critics and defenders of science came abruptly to public attention with the publication of Alan Sokal’s brilliant hoax article ‘Transgressing the boundaries’ in a special issue of the cultural studies journal Social Text in 1996 entitled Science Wars: see Sokal and Bricmont (1998). What does this book have to contribute, given the above avalanche of criticism of science? The criticisms of science developed in this book are diametrically opposed to the above, in so far as the above criticisms oppose scientific rationality, seek to diminish or restrict its influence, or hold that it is unattainable. My central point is that we suffer, not from too much scientific rationality, but from not enough. What is generally taken to constitute scientific rationality is actually nothing of the kind. It is rationalistic neurosis, a characteristic, influential and damaging kind of irrationality masquerading as rationality. Science is damaged by being trapped within a widely upheld but severely defective philosophy of science; free science from this defective philosophy, provide it with a more intellectually rigorous philosophy, and it will flourish in both intellectual and humanitarian terms. And more generally, as we shall see, academic inquiry as a whole is damaged by being trapped within an intellectually defective philosophy of inquiry; free it from this defective philosophy, from its rationalistic neurosis, and it will flourish in intellectual and human terms. It is not reason that is damaging, but defective pretensions to reason — rationalistic neurosis —masquerading as reason. Thus what I seek to do here is the exact opposite of what all those who oppose science and scientific rationality do. I shall argue that Reason, the authentic article, arrived at by generalizing the progress-achieving methods of science, can have profoundly liberating and enriching consequences for all worthwhile, problematic aspects of life, and thus deserves to enter into every aspect of life. The bare bones of the argument of this book can be stated quite simply like this. Science cannot proceed without making the substantial metaphysical assumption that the universe is physically comprehensible (to some extent at least). But this conflicts with the orthodox view that in science everything is assessed impartially with respect to evidence, nothing being permanently assumed independently of evidence. So the metaphysical assumption of comprehensibility is repressed. Science pretends that no such assumption is made. But this damages science. For the assumption is substantial, influential and highly problematic. It needs to be made explicit within science so that it can be critically scrutinized, so that alternatives can be developed and considered. Pretending the assumption is not being made undermines the intellectual rigour of science, its intellectual value and success. And it does not stop there. For science also makes value assumptions. Quite properly, science is concerned to discover that which is of value. New factual knowledge devoid of all value (whether intellectual or practical) does not contribute to science. But the orthodox view of science holds that values have no place within science. As in the case of metaphysics, here too, science pretends that values have no role to play within the intellectual domain of science. And this damages science. For values are, if anything, even more influential and problematic than metaphysics (in influencing the direction of research). Here too, values need to be made explicit within science so that they can be scrutinized, so that alternatives can be developed and assessed. Pretending that values play no role within the intellectual domain damages science; both the intellectual and the practical aspects of science are adversely affected. Science fails to pursue those avenues of research that lie in the best interests of humanity. And it goes further. Science is pursued in a social, cultural, economic and political context. It is a part of various social, economic and political projects which seek to achieve diverse human objectives. But the idea that science is an integral part of humanitarian or political enterprises with political ends clashes, once again, with the official view of science that the aim of science is to improve factual knowledge. The political objectives of science are repressed. And, once again, this damages science. For, of course, the political objectives of science, like all our political objectives, are profoundly problematic. These need to be made explicit so that they can be scrutinized, so that alternatives can be developed and considered. The pretence that science does not have this political dimension once again undermines the intellectual rigour of science, and its human value. It lays science open to becoming a part of economic, corporate and political enterprises that are not in the best interests of humanity. The upshot of the line of argument just indicated is that we need to bring about a revolution in the aims and methods of science, and of academic inquiry more generally. Natural science needs to change; its relationship with the rest of academic inquiry, with social inquiry and the humanities, needs to change; and most importantly and dramatically, academic inquiry as a whole needs to change. The basic task of the academic enterprise needs to become to help humanity learn how to tackle its problems of living in more cooperatively rational ways than at present. We need to put the intellectual tasks of articulating our problems of living, and proposing and critically assessing possible solutions, possible and actual actions, at the heart of academic inquiry. The basic task needs to be to help humanity learn a bit more wisdom – wisdom being the capacity to realize what is of value in life, for oneself and others, wisdom including knowledge and technological know-how, but much else besides. Natural science, despite its flaws, has massively increased our knowledge and technological know-how. This in turn has led to a massive and sometimes terrifying increase in our power to act. Often this unprecedented power to act is used for human good, as in medicine or agriculture. But it is also used to cause harm, whether unintentionally (initially at least) as when industrialization and modern agriculture lead to global warming, destruction of natural habitats and rapid extinction of species, or intentionally, as when the technology of war is used by governments and terrorists to maim and kill. Before the advent of modern science, when we lacked the means to do too much damage to ourselves and the planet, lack of wisdom did not matter too much. Now, with our unprecedented powers to act, bequeathed to us by science, lack of wisdom has become a menace. This is the crisis behind all the other current global crises: science without wisdom. In these circumstances, to continue to pursue knowledge and technological know-how dissociated from a more fundamental quest for wisdom can only deepen the crisis. As a matter of urgency, we need to free science and academia of their neuroses; we need to bring about a revolution in the academic enterprise so that the basic aim becomes to promote wisdom by intellectual and educational means. At present science and the humanities betray both reason and humanity. The argument of this book, which I have just summarized, begins with a discussion of the philosophical and methodological problems that beset theoretical physics. At once, many of those who are concerned about moral, political and environmental issues that plague our world today, will feel impatient. What have the methodological problems of theoretical physics to do with third world poverty, war and the threat of war, pollution, extinction of species, the menace of conventional, chemical, biological and nuclear armaments? I can only plead with such a reader: patience. The root cause of the sickness of our times does indeed lie, I claim, with a methodological sickness of natural science or, even more specifically, of physical science. What makes the modern world so utterly different from all previous ages is our possession of modern science and technology. This is the instrument that has changed the conditions of human life almost beyond all recognition, and put unprecedented, and sometimes terrifying, powers into our hands. One should not dismiss out of hand the suggestion that a part of our problem may lie with this instrument, this engine, of rapid change. We see, here, too, the way in which intellectual specialization, referred to above, has effectively concealed from view the nature and extent of the problem that confronts us. The argument that I shall develop in what follows begins with physics, with problems concerning the aims and methods of physics. But it then leaps to social science, to philosophy, to the humanities, to education, to psychotherapy, and to politics: in the end there is scarcely an aspect of modern life that is not touched and, potentially, affected by the argument. How many academic experts are prepared to follow, to take seriously, an argument that ranges so recklessly across such a wide range of academic disciplines? How many non-academic non-experts? But just this is what the argument and message of this book requires. I hope that the reader will endure with patience the somewhat esoteric discussion concerning the aims and methods of physics pursued in chapter one. This may not seem to have anything much to do with the urgent problems of our times, but it does. This is in part how the intellectual disaster I seek to expose in this book conceals itself from view: it buries itself in the obscure, recondite field of the philosophy of physics. Those who devote their lives to the philosophy of physics are, by and large, too myopic to see how their specialized field of study has anything to do with the great and dreadful humanitarian problems and disasters of our age; and those who are above all concerned with these humanitarian disasters have no time at all for abstruse issues concerning the aims and methods of physics. And so the connection is never made. As it happens, the methodological neurosis of physics, with which we begin in chapter one, is actually a quite simple matter to grasp. It does not require any real knowledge of physics to understand. Indeed, physicists and philosophers of physics are much more likely to find the argument difficult to follow than are non-experts. We non-scientists can stand back and see the whole wood; scientists, trained to think in terms of the current orthodox conception of science, trapped in the thickets of research, will find this much harder to do. In an attempt to take this peculiar circumstance into account, I have arranged the exposition as follows. In chapter one I give a simple exposition of the case for declaring natural science to suffer from what I call "rationalistic neurosis"; this avoids all technicalities, and goes straight to the heart of the matter. In the appendix I tackle a host of more technical objections that may be made to the elementary argument of chapter one. So, those experts in the fields of the philosophy of physics and philosophy of science who find the argument of chapter one naïve and unconvincing, should consult the appendix before tossing the book away in disgust. I write in the hope that there will be a few who will not dismiss out of hand the suggestion that the question of how we are to go about learning how to live in wiser and more civilized ways might have something to learn from scientific learning, and will take the trouble to pursue the line of argument traced out in this book. I write in the hope that these few will grasp just how desperate our situation is, how urgent the need to change the status quo, and will do everything in their power to alert others to the need to heal the methodological sickness from which our institutions and traditions of learning at present suffer. To begin with, we need a campaigning organization, modelled perhaps on "Friends of the Earth", which might be called something like "Friends of Wisdom". (shrink)

The aim of this study was to gain a deeper understanding of the experience of time when living with severe incurable disease. A phenomenological and philosophical approach of description and deciphering were used. In our modern health care system there is an on-going focus on utilizing and recording the use of time, but less focus on the patient’s experience of time, which highlights the need to explore the patients’ experiences, particularly when life is vulnerable and time is limited. The (...) empirical data consisted of 26 open-ended interviews with 23 participants receiving palliative care at home, in hospital or in a nursing home in Norway. The theoretical frameworks used are mainly based upon K. Martinsens philosophy of care, K. E. Løgstrup phenomenological philosophy, in addition to C. Saunders’ hospice philosophy, L. Feigenberg’s thanatology and U. Qvarnström’s research exploring patient’s reactions to impending death. Experience of time is described as being a movement that moves the individual towards death in the field of opposites, and deciphered to be a universal, but a typical and unique experience emerging through three integrated levels: Sense of time; where time is described as a movement that is proceeding at varying speeds. Relate totime; where the awareness of limited life changes the understanding of time to be more existential. Being in time; where limited time seems to clarify the basic living conditions and phenomena of life. The existence of life when the prospect of death is present is characterized by emotional swings that move within polarizing dimensions which is reflected in the experience of time illustrated as the moves of the pendulum in a grandfather clock. The diversity of the experience of time is oscillating between going fast or slow, being busy or calm, being unpredictable but predictable, safe or unsafe and between being good or bad, depending on the embodied situation of the individual. (shrink)

BackgroundEverybody has the right to decide whether to receive specific medical treatment or not and to provide their free, prior and informed consent to do so. As dementia progresses, people with Alzheimer’s dementia (PwAD) can lose their capacity to provide informed consent to complex medical treatment. When the capacity to consent is lost, the autonomy of the affected person can only be guaranteed when an interpretable and valid advance directive exists. Advance directives are not yet common in Germany, and their (...) validity is often questionable. Once the dementia diagnosis has been made, it is assumed to be too late to write an advance directive. One approach used to support the completion of advance directives is ‘Respecting Choices’®—an internationally recognised, evidence-based model of Advance Care Planning (ACP), which, until now, has not been evaluated for the target group of PwAD. This study’s aims include (a) to investigate the proportion of valid advance directives in a memory clinic population of persons with suspected AD, (b) to determine the predictors of valid advance directives, and (c) to examine whether the offer of ACP can increase the proportion of valid advance directives in PwAD.MethodWe intend to recruit at leastN = 250 participants from two memory clinics in 50 consecutive weeks. Of these, the first 25 weeks constitute the baseline phase (no offer of ACP), the following 25 weeks constitute the intervention phase (offer of ACP). The existence and validity of an advance directive will be assessed twice (before and after the memory clinic appointment). Moreover, potential predictors of valid advance directives are assessed.DiscussionThe results of this study will enhance the development of consent procedures for advance directives of PwAD based on the ACP/Respecting Choices (R) approach. Therefore, this project contributes towards increasing the autonomy and inclusion of PwAD and the widespread acceptance of valid advance directives in PwAD.Trial RegistrationDRKS, DRKS00026691, registered 15th of October 2021,https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00026691. (shrink)

Photo by Tingey Injury Law Firm on Unsplash ABSTRACT The coverage of healthcare costs allegedly brought about by people’s own earlier health-adverse behaviors is certainly a matter of justice. However, this raises the following questions: justice for whom? Is it right to take people’s past behaviors into account in determining their access to healthcare? If so, how do we go about taking those behaviors into account? These bioethical questions become even more complex when we consider them in the context of (...) a commitment to publicly funded, universal healthcare coverage. INTRODUCTION Healthcare coverage of lifestyle-related conditions is certainly a matter of justice. However, this raises the following justice-related question: Is it right to consider people’s past behaviors in determining their access to healthcare? If so, the methods of taking those behaviors into account must be fair and justifiable. This bioethical question becomes even more complex when we consider it in the context of a commitment to publicly funded, universal healthcare coverage. This paper takes an old, classic debate, evaluates newer approaches, and offers an argument favoring a combined approach which alters the liberal-egalitarian solution to account for social justice. ANALYSIS I. Causes of Disease If healthcare coverage were universal, irrespective of socioeconomic status and lifestyle, people would contribute to the cost of remedying the lifestyle-induced health problems of others. In the West, lifestyle-related diseases are burdensome.[i] This paper approaches this concern from a western lens that incorporates both a European tradition of “social safety nets” and an American tradition of personal freedoms. By taking such an approach, solutions to the consequences of one’s past behavior burdening others must consider an individual’s personal freedom to choose to act as he or she wishes, with the distributive social and economic equality of the many. The concept of disease caused by lifestyle and diet is proven. Many health conditions include behavioral risk factors. Multi-pack smoking increases the risk of chronic lung disease, while obesity increases the risk of type 2 diabetes. Inattention to high blood pressure, high cholesterol, and a lack of exercise leads to increased risks of coronary artery disease.[ii] While poor lifestyle choices certainly influence these conditions, their causes are multifactorial, and it is difficult to say that any single string of poor choices led to their development. In a scenario where two men excessively eat fast food for 20 years, several discrete factors impact whether any of them might suffer an ischemic-embolic stroke or not. Genetics, circumstances, and activity will also contribute to outcomes. II. Alcohol-Related End-Stage Liver Disease One paper suggests that alcohol-related end-stage liver disease (ARESLD) differs from other multifactorial disorders as alcohol alone causes the disease.[iii] It justifies attributing personal responsibility to patients with ARESLD because the condition develops only after the cumulative effects of large quantities of alcohol consumed from years to decades.[iv] However, the paper undermines its position by admitting that even the susceptibility to becoming an alcoholic has some degree of genetic predisposition.[v] Given the extreme scarcity of donor livers, some patients may be prioritized over others on the transplant waiting list. Since donor livers cannot be given to everyone, transplanting a liver into an alcoholic may result in death for competing candidates whose liver disease was not their fault. All else being equal, if bioethicists avoid claiming moral deficiency or judgment, those with apparently self-inflicted ARESLD will not be deprived of treatment but will have a lower priority for transplant.[vi] In contrast, another position suggests that it is often difficult to define what behaviors are punishable as these are largely personal and value-laden.[vii] Still, people do not support using their own resources to support the consequences of others’ poor choices, no matter how objective.[viii] In democratic societies, one must take into consideration community morals and values.[ix] Even if we were to punish people for their health-adverse behaviors, we could not logistically employ the vigorous and sustained efforts necessary to determine whose actions are morally weak.[x] III. The Liberal-Egalitarian Proposal One past argument proposes a liberal-egalitarian solution to manage personal responsibility for so-called “lifestyle diseases.”[xi] This Rawlsian system combines the European-style “social safety net” commitment to social and economic equality with the American liberal notion of pluralist toleration and personal freedoms. This idealized system aims to hold people responsible for their choices rather than the consequences to mitigate the downside of blaming those who might not be blameworthy. The approach avoids determining the questionable nature of luck and personal responsibility for health outcomes, fairness in the distribution of economic burden, and the intrusiveness required to practically determine who acts in a morally wrong and health-adverse way. The liberal-egalitarian model, a theory of distributive justice, has two facets: the liberal principle that people should be held accountable for their choices and the egalitarian principle that people who make the same choices should have the same outcomes.[xii] This model attempts to fuse responsibility with equity by seeking to reward good behavior and tax bad behavior rather than punish the consequences of the action and navigate who deserves treatment. For instance, the hospital bedside is not the appropriate place to introduce responsibility for one’s health outcomes.[xiii] This appeals to the reality that, at that time, discerning the true causes of disease was not plausible and to humanity in avoiding a heartless and cruel approach. An argument in favor of the liberal-egalitarian model considers its method of implementation. This approach assumes that the healthcare system treats all individuals regardless of their choices or ability to cover costs. The liberal-egalitarian model also assumes that a certain adverse health condition is related, statistically speaking, to the consumption of a certain good and that good can be taxed. As such, it proposes to tax the consumption of that good to finance the collective burden which arises from that good’s consumption rather than require individuals to pay for their own treatment. In the example of ARESLD, the recommended solution would be taxing all alcohol. While a systematic infrastructure is not explicit, there is the implication that a per-unit tax can be imposed on alcohol so the total tax revenue would make up for the additional healthcare costs due to consumption.[xiv] Upholding the principle that all people who make the same choices should face the same costs, all consumers of alcohol would pay the same tax, regardless of factors such as genetic predisposition to alcoholism, lifestyle, or expected cost of treatment. Upholding the principle of individual responsibility, this model does not deny treatment to anyone, neutralizing factors outside that individual’s control by imposing the tax ex-ante. Other people are not burdened by those who consume the good. People who consume alcohol face a burden proportional to the amount consumed. This tax-based implementation is justified so long as the tax is not prohibitively high for the average consumer. Further, the model mitigates concerns over the intrusiveness of ascribing morality to health-adverse behaviors. IV. Moral and Social Arguments Against the Liberal-Egalitarian Position Arguments against the liberal-egalitarian model concerns its many assumptions. First, this model assumes that consumption of such goods is directly related to the health outcome and that these goods can be taxed.[xv] Certain people genetically predisposed to alcoholism would be predisposed to consume more alcohol. The model falls short when applied to scenarios where health outcomes are not consumption-based, such as engaging in unsafe sex or abstaining from healthy lifestyle choices like exercise. Second, some might argue that the liberal-egalitarian model fails to remain neutral. Residual moral judgments tied to consumption choices introduce non-neutrality. Although taxation in free societies is determined by democratic procedures rather than by individuals in the healthcare system, moral and value-based judgments will be implicit in deciding what behaviors are taxable, such as the purchase of cigarettes. Third, the liberal-egalitarian model fails to determine whether one’s behavior is autonomous, as socio-cultural-economic factors may influence it and behavior is more a product of society, peer pressure, or income. Those also may reflect systemic inequalities. Therefore, this model, which rewards, or taxes based solely on decisions, regardless of their consequences and motivations, fails to consider that a person’s decisions may not be completely autonomous. V. Libertarian Arguments Against the Liberal-Egalitarian Model a. State Intrusiveness as Counter to the Liberal-Egalitarian Model Last, there is a libertarian worry that if the state guarantees universal healthcare coverage to all people, the state will have to become highly intrusive and investigate people’s morals.[xvi] At least one-third of all disease burden in North America, Europe, and the Asia-Pacific is attributable to lifestyle measures such as tobacco smoking, alcohol consumption, high cholesterol, and obesity.[xvii] With these various lifestyles, it is not likely to agree on what conduct to tax or condemn.[xviii] The fine-toothed comb required to determine whether each citizen has been engaging in these behaviors would intrude on daily life and personal freedom. Libertarians champion the argument that impractical intrusiveness would result from universal healthcare, and such a degree of intrusiveness would likely be universally unacceptable.[xix] The liberal-egalitarian model mitigates the libertarian worry about state intrusiveness as it does not involve prying into one’s life and choices other than taxing goods. A liberal state should ideally be neutral to how people decide to live their lives. In all, libertarians can rest assured that the liberal-egalitarian tax-based model, through its ex-ante implementation, will require no prying state eyes. States that provide universal healthcare coverage and wish to condemn certain misconduct do not need to become overly intrusive to carry out measures to hold individuals accountable. b. Fairness Another libertarian worry regarding the guarantee of universal healthcare coverage in the context of lifestyle-driven diseases is that the public will be burdened unfairly with covering others’ ill-advised mistakes or bad luck. An ideal system to address this worry would link treatment or payment for treatment with whatever behavior caused that need.[xx] The distribution of burdens should be linked to how different individuals contributed to the creation of those burdens. Applied to health policy, we should ask how the need for a certain treatment arose when determining how to distribute its cost.[xxi] The liberal-egalitarian model aspires to hold individuals responsible for their choices, not for the consequences of such choices. This model significantly mitigates the libertarian worry over unfair burdens for covering other people’s mistakes or social conditions, which lead to those bad outcomes, by ensuring to not burden others with any of the costs for the treatment of people who decide to engage in certain health-adverse behaviors. The aforementioned taxation-based system would only tax those who also engage in the health-adverse behavior through consumption, and that tax directly pays for the necessary collective treatment. As such, those who do not consume the good are not involved with the payment scheme, while those who do consume the good are responsible for payment in a matter proportional to the amount of the good they have consumed. VI. Universal Coverage Taking a step back, one should consider whether these worries regarding the coverage of apparently self-inflicted health conditions in the context of universal healthcare are worthwhile issues. One perspective raises what is called the culturally imagined objection — an idea erroneously held by many that sick people, especially those who are poor and uneducated, bring these illnesses upon themselves due to poor decision-making and irresponsible risk-taking.[xxii] This perspective critiques the uniquely American view that, since individuals are free to choose their lifestyles, they should bear the costs of their lifestyle.[xxiii] Taking this argument further, some (perhaps the strongly libertarian) would say that the poor health status among many individuals is the price individuals must pay for their American way of life and the liberty and freedom to live as they wish. However, people should not completely punish individuals for their health-adverse behaviors because these choices are largely pre-determined by a person’s socioeconomic influences.[xxiv] The outcomes from these allegedly ill-advised behaviors, which largely affect poorer people, are not just poor behavior but rather a public health crisis. Perhaps the state and its people should take collective responsibility and cover the costs of treatment for those health outcomes without question, as a form of public service. Rather than worrying about accountability and taxing bad behavior or intrusiveness into personal decisions, some might argue that people need to collectively take responsibility for reducing the overarching systemic inequalities and covering the associated treatment costs as a measure of public health. VII. Proposed Solution Given the strengths of the liberal-egalitarian model and taking into account libertarian and social justice-oriented objections, an ideal solution for the coverage of lifestyle-related health problems needs to consider the complex relationship between a person’s behaviors and their apparent health outcomes. It must consider how society as a whole passes judgment on behaviors and how to take into account that many health-adverse decisions are not truly autonomous decisions, as various genetic and socioeconomic factors influence them. An ideal solution combines the liberal-egalitarian tax-based model with the social justice concerns of universal coverage. Whatever the cost for the treatment of medical issues resulting in part or entirely from lifestyle and diet, taxes collected from spending associated with the behavior (like the purchase of alcohol, junk food, and cigarettes) ex-ante should fund 50 percent of the cost of treatment, while the universal healthcare taxation scheme should include the other 50 percent. Such a system would provide an incentive to avoid the purchases that can lead to unhealthy consumption and make healthier choices, slightly punish and discourage such purchases through taxation, yet not overly punish people whose outcomes may have more to do with socioeconomic factors and genetics. Adding public responsibility demonstrates acknowledgement that health care is in the public interest and can mitigate public health inequalities. This solution would fuse personal responsibility with the public responsibility of state-sponsored social improvement while ensuring that all people have fair access to necessary treatment, no matter their ability to pay. CONCLUSION The 50-50 system this paper proposes reflects both justice and personal responsibility in covering healthcare costs allegedly brought about by people’s own health-adverse behaviors. By allocating tax revenue from consumption that contributes or even alone causes poor health outcomes, such a system incorporates personal responsibility. By using general tax revenue for health care, such a system would meet the libertarian requirement of providing care without any moral investigation of past behaviors and the social justice consideration of providing health care to those who may have unwittingly ventured into ill-health due to systemic injustice, socioeconomics, or genetics. - [i] Cappelen, A. W. (2005). Responsibility in health care: A liberal egalitarian approach. Journal of Medical Ethics, 31(8), 476–480. https://doi.org/10.1136/jme.2004.010421 [ii] Moss, A. H. (1991). Should alcoholics compete equally for liver transplantation? JAMA: The Journal of the American Medical Association, 265(10), 1295–1298. https://doi.org/10.1001/jama.1991.03460100097032 [iii] Moss, p. 1295-1298. [iv] Moss, p. 1296. [v] Moss, p. 1295-1298. [vi] Moss, p. 1295-1298. [vii] Cohen, C. IS THIS SUPPOSED TO BE COHEN AND BENJAMIN (1991). Alcoholics and liver transplantation. JAMA: The Journal of the American Medical Association, 265(10), 1299–1301. https://doi.org/10.1001/jama.1991.03460100101033 [viii] Cohen, p. 1299-1301. [ix] Moss, p. 1297. [x] Cohen, p. 1300. [xi] Cappelen, p. 478-480. [xii] Cappalen, p. 478-480. [xiii] Cappelen, p.479. [xiv] Cappelen, p. 479. [xv] Cappelen, p. 479 [xvi] Cohen, p. 1301. [xvii] Cappelen, p. 478. [xviii] Cohen, p. 1299-1301. [xix] Cohen, p. 1301. [xx] Cappelen, p. 476-480. [xxi] Cappelen, p. 476-480. [xxii] Kawachi, I. (2005). Why the United States is not number one in Health. Healthy, Wealthy, and Fair, 18–33. https://doi.org/10.1093/acprof:oso/9780195170665.003.0013 [xxiii] Kawachi, p. 18-33. [xxiv] Kawachi, p. 18-33. (shrink)

Introduction. In the context of the COVID-19 pandemic, which spread around the world in early 2020, special attention is paid to external transformations in human life: forced staying at home, using personal protective equipment in public places, social distance, etc. Nevetheless, the inner world of a man is susceptible to serious transformations. Another necessary element that structures the world of self (J. Deleuze’s point of view) is turning into a potential carrier of the virus. Therefore, the problem of human reflection (...) with the goal of taking care of oneself in a crisis situation is of particular relevance. The aim of the study is to substantiate the effectiveness of spiritual practices of the period of Antiquity and the early Middle Ages as forms of caring of the internal in a person in the pandemic. Methods. The author uses general scientific methods: analysis and synthesis, induction, deduction, abstraction. In addition, a comparative historical method, an interpretation method and a systematic approach are applied. With the help of the dialectical approach, the connection between the external and the internal in a person was designated. Scientific novelty of the study. Three scenarios of human responses to self-isolation in the context of an event (external) – meaning (internal) are outlined: orientation to an external event; creating an external event; appeal to the self. Results. In the context of self-isolation, staying alone with himself, a person faced a problem, a crisis of identity (empirical evidence for this problem was provided by psychologists and psychotherapists in Chelyabinsk and the Chelyabinsk region). This problem is due to the fact that the pandemic has reduced many of the person’s connections with the outside world (work, study, relationships with friends and relatives) and / or transferred them to a remote format. Therefore, consciously or optionally, at the level of an unreasonable request, a person has a need to rethink his self. Rethinking is a reflexive procedure when a person re-learns to communicate with his self. M. Foucault analyzed and systematized examples of spiritual work with I, looking into the practices of care of the self in ancient thinkers’ and early Christians’ studies. Conclusion. The COVID-19 virus has made significant adjustments to human life. No less adjustments were made to the events (F. Girenok) that fill the life of a person. A man’s replies to changes in his being can be laid between two poles: event and meaning. Even while at home, many continue to focus on the external, creating something of their own (for example, audiovisual production) or consuming the results of others. At the same time, orientation to meaning involves focusing on oneself. Philosophers and theologians who practiced self-care about two millennia ago, proposed different forms of reflection, pursuing one goal, to learn to talk with oneself. (shrink)