Abstract.The United Kingdom Department of Health initiative on “The Expert Patient” (2001) reflects recent trends in political philosophy, ethics and health services research. The overall objective of the initiative is to encourage patients, particularly those suffering from chronic conditions to become more actively involved in decisions concerning their treatment. In doing so there would be (perhaps) an expectation of better patient compliance and (arguably) a resultant improvement in quality of life. Despite these anticipated beneficial influences on health outcomes, (...) there may be a danger that such initiatives are being carried along by the general swell of enthusiasm for recognising and facilitating the claims of disadvantaged or discriminated against groups. What more attractive than that patients should be “liberated” from what might be seen as the oppression of medical paternalism? To a great extent the potential for success of the Expert Patient venture turns on:(a) whether and to what extent a patient can be considered truly to be an expert and (b) full acceptance by the medical and heath care professions of allowing patients a more equitable and positive role.Whilst clearly the patient is an expert in the hermeneutic sense – it is they and they alone who experience their illness – there is nevertheless a risk of confusing experience with expertise. Experience limited to an individual does not of itself give rise to the generalisations that underlie reliable clinical treatment. Neither do the vast majority of patients possess the physiological and pharmacological knowledge to fully appreciate the biological nature of their illness nor the basis, risks or limitations of therapeutic measures. Might the notion of “The Expert Patient” as informed co-decision maker become a well-meaning but rather vacuous aspiration similar to that of informed consent? Even worse, could patient “empowerment” have a deleterious effect? The paper reviews some of the major issues and concludes that the expert patient initiative could have benefits for both patients and health professionals if operated on the basis of concordance: an informed collaborative alliance that optimises the potential benefits of medical care. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Every Patient is a Teacher—Especially the "Difficult" Ones:Caring for Patients with Borderline Personality DisorderCara ConnaughtonNo one can teach you how to work with a patient living with borderline personality disorder quite like a patient living with borderline personality disorder (BPD). The lesson [End Page E9] isn't on how to be the perfect caregiver or how to meet all the patient's needs. The lesson is to (...) notice that the quality of care and the patient's response are not always mutually dependent and that holding ourselves to impossible standards will only lead to resentment, job dissatisfaction, and potentially burnout.I had a very good teacher on this subject and her name was Sandra.1 Sandra was admitted to our hospital unit with end stage cervical cancer. She had attempted to treat her illness by using only homeopathic remedies, which hadn't abated the disease. While at the hospital, Sandra was intensely controlling over her medications as well as when and how she took them. Sandra had also been diagnosed with BPD. One symptom of her disorder manifested in staff splitting: she saw staff members as either good or bad and treated them as such—her thinking was very black and white. She would talk very badly about other nurses to the current nurse working or talk very well about her favorite nurse in a way that made me and other nurses feel that we weren't measuring up. Sandra also exhibited intense anger toward most staff and had unexpected mood swings—I didn't know what I was going to get when I walked into her room but was fairly certain it would include berating and belittling comments. This same treatment was given to most staff nurses except for one. Sandra's favorite nurse was Bonnie; Bonnie couldn't understand why the rest of the nursing staff found Sandra difficult since she was always treated very well by this patient.I dreaded coming to work to find Sandra as part of my patient assignment for the day. I knew that day would be full of cutting remarks and disappointment from Sandra, no matter how hard I tried to provide compassionate and quality care. Further, trying to meet her seemingly endless needs took away from the care that I could provide for the other patients on my assignment. I could easily spend an hour in Sandra's room doing various tasks while she expressed frustration and anger toward me—I couldn't seem to do anything right.I have cared for many "difficult" patients throughout my years as a bedside nurse—including those who were physically and verbally aggressive—but Sandra always stands out as the most "difficult" because her words and behavior cut right through me. Even the briefest interactions with Sandra left me questioning my competence as a nurse, something I hadn't experienced when caring for other "difficult" patients.A turning point in how I related to Sandra's behavior occurred one day shift when she was part of my patient assignment. Sandra had been off the unit for a treatment from before I'd even started my shift at 7 am. At 11 am, Sandra arrived back on the unit. A few minutes later, I brought her 9 am medications to her room. The medications were technically late, but of course, it would have been impossible for me to bring them to her on time as she wasn't even present on the unit. She said angrily, "These are late! Bonnie never brings my medications late!" At that moment, something switched in my mind—it wasn't me! What a relief. I had to let go of the idea that I needed to make this patient happy in order to be a good nurse. Prior to this incident, I determined how good of a job I was doing based on how happy my patient appeared with their care. I realized that a patient's satisfaction wasn't always dependent on the quality of the care I provided.All of us provided the best care that we could for Sandra. To help us do this while maintaining our own mental wellness, we rotated... (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)

Most studies evaluating companion effects on medical triadic interaction focus on the doctors' part, e.g., how the companion's presence diverts doctors' attention away from the patient. In contrast to this mainstream approach, the current research proposes an alternative framework by focusing on the patient parties—especially on how companion participation reshapes the discourse sequences where patient parties provide information, and how it affects patient full turns and priority in providing complete first-hand information to doctors. By examining (...) fifteen geriatric triadic conversations collected in a teaching hospital in southern Taiwan, this proposed framework concludes that in the companion's presence, the information providing sequences are restructured into eight patterns, among which sole information provider is preferred to joint providers. Furthermore, the more companions participate in providing information, the less patients by themselves volunteer information or respond to doctors' questions prior to companions' verbal involvement. A more striking companion effect shows that even in the triads with a low-participation companion, whenever the companion does participate, the patient rarely has a full turn or priority to complete an information unit. The patient's turns are either taken, are simultaneous with, or cut-off by the companion's participation. (shrink)

Increasing globalization of the nursing workforce and the desire for migrants to realize their full potential in their host country is an important public policy and management issue. Several studies have examined the challenges migrant nurses face as they seek licensure and access to international work. However, fewer studies examine the barriers and challenges internationally educated nurses (IEN) experience transitioning into the workforces after they achieve initial registration in their adopted country. In this article, the authors report findings from (...) an empirically grounded study that examines the experience of IENs who entered Ontario’s workforce between 2003 and 2005. We found that migrant nurses unanimously described nursing as ‘different’ from that in their country of origin. Specifically, IENs reported differences in the expectations of professional nursing practice and the role of patients and families in decision‐making. In addition, problems with English language fluency cause work‐related stress and cognitive fatigue. Finally, the experience of being the outsider is a reality for many IENs. This study provides important insights as policy and management decision‐makers balance the tension between increasing the IEN workforce and the delivery of safe patient care. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Insightlessness, the Deflationary TurnJennifer Radden (bio)Keywordsinsightlessness, deflationary turn, Harry Stack Sullivan, open placebos, space of reasonsMarga Reimer argues that treatment compliance in patients who are without any, or complete, insight into psychotic symptoms may be neither particularly abnormal nor entirely unreasonable. In broad sympathy with these conclusions, I wish only to add a couple of ancillary observations and some historical context.Reimer's discussion can be placed alongside other research (...) on aspects of psychosis putting forward what have been called "deflationary" accounts, accounts that depict psychotic symptoms as differing from normal states, traits, and responses in degree rather than kind. Such accounts have been offered about auditory hallucinations or "hearing voices" (Leudar and Thomas 2000; Romme and Escher 1989; Smith 2007), about delusional thinking (Bentall 2003; Bentall et al. 1989; Bracken and Thomas 2005; Hamilton 2007; Kinderman and Bentall 2007), and spiritual experiences (Jackson 1997; Jackson and Fulford 1997); in the introduction of the notion of "benign psychosis" (Jackson 2007), and even in recognition that insight is a complex, dimensional attribute (Amador and David 1998). Harkening back to the middle years of the twentieth century, and associated with Adolph Meyer's influence in the United States, as well as the influence of psychodynamic (and psychoanalytic) ideas, this deflationary turn challenges the neo-Kraepelinian presuppositions of our contemporary biomedical psychiatry. Rather than sharply separating psychotic states and symptoms from normal experience, the deflationary approach emphasizes the continuities and similarities linking them.Reimer proceeds in two separate steps. To the extent that treatment compliance among patients suffering psychotic states occurs in the absence of any or full insight, it is shown, this seems not dissimilar from other more ordinary cases where treatment compliant behavior occurs either without—or without regard for—a recognition that one is ill. (The term insightlessness is here used to indicate the absence of full and complete insight. This recognizes the dimensional and complex nature of insight, which has been shown to involve a range of beliefs over one's disorder, those about its presence, about the need for treatment, and about the social consequences of suffering it.)Had her discussion stopped here, Reimer would have completed the first "deflationary" step. By showing that this sort of insightless treatment compliance also occurs in the absence of mental disorder, she encourages us to see psychotic patients' lack of insight into their disorder as at least akin to more benign and commonplace responses. In doing so, she would have shifted something of the burden of proof within discussions of insight. Those insisting insightlessness is an irresoluble obstacle to positive treatment outcomes would [End Page 81] now be required to explain why this should be so. And those denying the analogy between the insightless compliance of the psychotic patient and more everyday cases such as those Reimer describes, might be called upon to show why these cases were disanalogous.Reimer does not leave matters there. She goes on to establish that none of the instances of insightless treatment compliance that she discusses can be judged to be entirely unreasonable. Treatment compliance without full insight is not only quite normal, it may not even be particularly irrational. As she explains, the patients in each case anticipate benefits from the treatment, even though such benefits are not understood in terms suggestive of pathology. Unfailingly, they conform to a general human tendency: [T]o act in accordance with what we perceive, rightly or wrongly, to be in our best interests.Reimer locates the error in more traditional thinking about lack of insight at the immodest assumption that there is but a single way to accurately characterize the patient's condition—medically. This view, which she attributes to contemporary psychiatry, she finds mistaken—and mistaken, I agree it is. Rather than one, there seem likely to be several accurate ways to frame things. And although the medical framing will best fit the interests and purposes of clinicians, other framings may better suit the interests of their patients.When the possibility of alternative, non-medical perspectives is granted, and our goal is to assess insightless compliance vis à vis rationality norms, a number of considerations gain salience. The insightless patient, Reimer shows, may... (shrink)

Professor Bryant’s article – which seeks to discover whether aspects of an anticruelty statute can be based directly on a call to virtuous conduct – is a provocative piece of scholarship that harbors a much larger question: Can a general principle mandating full respect for animals be developed out of the moral methodology inhering in virtue ethics? Insights garnered in this rejoinder are meant to stand alongside those in Professor Bryant’s article to lend deep moral grounding to animal-respect as (...) well as provide intimations of the way virtue ethics as a moral methodology might yield determinate answers to moral questions. Toward this end, this paper has several sections. The first section briefly outlines virtue ethics as a moral methodology with particular attention to its highly situated and somewhat ad hoc aspect. The second section explores efforts over the last several decades to rely first on utilitarianism and then on deontological approaches in pursuit of moral grounding for animal respect. The third section explores the particular challenges that utilitarianism or deontology must confront in attempting to provide moral grounding for any relationship between human beings and persons or creatures that are incapable of moral agency. Finally, I turn to the concept of fiduciary duty to see if it might be viewed as a type of virtue ethics – or perhaps an instance of virtue ethics in play. (shrink)

Informed consent bears significant relevance as a legal basis for the processing of personal data and health data in the current privacy, data protection and confidentiality legislations. The consent requirements find their basis in an ideal of personal autonomy. Yet, with the recent advent of the global pandemic and the increased use of eHealth applications in its wake, a more differentiated perspective with regards to this normative approach might soon gain momentum. This paper discusses the compatibility of a moral duty (...) to share data for the sake of the improvement of healthcare, research, and public health with autonomy in the field of data protection, privacy and medical confidentiality. It explores several ethical-theoretical justifications for a duty of data sharing, and then reflects on how existing privacy, data protection, and confidentiality legislations could obstruct such a duty. Consent, as currently defined in the General Data Protection Regulation – a key legislative framework providing rules on the processing of personal data and data concerning health – and in the recommendation of the Council of Europe on the protection of health-related data – explored here as soft-law – turns out not to be indispensable from various ethical perspectives, while the requirement of consent in the General Data Protection Regulation and the recommendation nonetheless curtails the full potential of a duty to share medical data. Also other legal grounds as possible alternatives for consent seem to constitute an impediment. (shrink)

Undocumented and undomiciled, Gustavo Jiménez had been in the United States for several years. He knew his leg wasn’t right when it began to swell and redden. After the cellulitis spread to his bloodstream, he was found unconscious on the street and admitted to the intensive care unit. He improved quickly and was soon able to tell a social worker his name and that he had family in Quito. Then his health took a turn for the worse, and he (...) developed multisystem organ failure. His doctors believed his prognosis grave and further care futile. They wanted to invoke a provision under their state’s law that allows, at the discretion of at least two physicians, for the withdrawal of life‐sustaining therapy for isolated and decisionally incapacitated patients, but the social worker had ethical concerns about the doctors’ desire to make such a momentous decision without family input. She asked for a “time‐out to locate his family,” but one of the doctors asserted, “His family isn’t here, and you’ll never find them. Besides we need the bed. The ER is full of patients we can help.” What is owed a patient and family in such a situation? (shrink)

Science and technology studies concerned with the study of lay influence on the sciences usually analyze either the political or the normative epistemological consequences of lay interference. Here I frame the relation between patients, knowledge, and the sciences by opening up the question: How can we articulate the knowledge that patients develop and use in their daily lives and make it transferable and useful to others, or, `turn it into science’? Elsewhere, patient knowledge is analyzed either as essentially (...) different from or similar to medical knowledge. The category of experiential knowledge is vague and is used to encompass many types of experience, whereas the knowledge of the `expert patient’ may be assumed to have the shape of up-to-date medical information. This paper shows through a case study of people with severe lung disease that patient knowledge can be understood as a form of practical knowledge that patients use to translate medical and technical knowledge into something useful to their daily life with disease. Patients coordinate this with homegrown know-how and advice from fellow patients, weighing different values - of which `taking good care of one’s body’ is but one - that may conflict in a specific situation. These practices result in sets of techniques that may be made useful to others. The paper argues for two alternatives to state-of-the-art medical research to turn patient knowledge into science: ethnographies of knowledge practices and the collection and making accessible of techniques. (shrink)

For years, the phenomenon of experimental reactivity (defined as the alteration of the subject’s behaviour as a result of their awareness of being studied) seemed to be of little or no concern to experimental economists. With their clear-cut methodological stance shaped by Vernon Smith’s list of precepts, economists could avoid the worries associated with subjects’ reactivity through a rigorous control over the incentives proposed by the experimental setting as designed in the game. More recently, as experimental economists gradually moved in (...) their study towards topics in which economic incentives intermingled with normative considerations (such as in the study of altruism, punishment, or social norms), a corresponding interest in the problem of reactivity has ensued. This chapter offers an interpretation of this transit: it argues that the success of experimental economics and the unforeseen expansion of their object of enquiry into the realm of ethics and norm-related behaviour forces experimental economists to adopt some of the conceptual tools of psychologists. This ultimately undermined the economists’ initial methodological project, but this is the price to be paid to study the mechanisms of prosociality. This way, and regarding the pitfalls of reactivity, experimental economists are in the same predicament as fellow psychologists, philosophers, and other social scientists. (shrink)

orbit and far beyond it. Indeed, the immense, painstaking, indefatigable and ever-improving effort of Husserl to find ever-deeper and more reliable foundations for the philosophical enterprise (as well as his constant critical re-thinking and perfecting of the approach and so called "method" in order to perform this task and thus cover in this source-excavation an ever more far-reaching groundwork) stands out and maintains itself as an inepuisable reservoir for philosophical reflec tion in which all the above-mentioned work has either its (...) core or its source. In fact, in his undertaking to re-think the entire philosophical enterprise as such and to recreate philosophy upon what he sought to be at least a satisfactorily legitimated basis, Husserl, through his already systematised and "authorized" work, and his courses, and later on in his spontaneous reflection (which did not find its way into a definitive corpus but was nevertheless sufficiently coherent with his previously established body of thought to be considered a continuation of it), uncovers perspectives upon the universe of man and projects their new philosophical thematisation that brings together all the attempts by philosophers (e. g., Merleau-Ponty, who drew upon this material and found there his own inspiration) who succeeded him with foundational intentions; it also gives a core of philosophical ideas and insights for the youngergenerationofphilosophers today. (shrink)

Patient participation is a fundamental principle in modern Western health care, but not necessarily simple to achieve. During hospital ward rounds, patient participation is further hindered by the multi-party nature of the encounter: at times, members of the medical team talk with each other rather than with the patient. This article examines patients’ opportunities to participate in ward round conversations when the patient is not the addressed recipient. The data consist of 3 hours of video-recorded ward (...) rounds in a Finnish hospital. Using conversation analysis, we study patients’ practices for getting a turn in different sequential environments. The patients monitor the ongoing conversation and exploit its sequential organisation by producing responsive turns and repair initiations, thus becoming active participants. They also produce their own initiatives, although sequential and multimodal constraints affect their possibilities for modifying the participation framework. The results of this study can be exploited to promote patient participation. (shrink)

This article explores the translation and migration of illegal drugs, humanistic therapies and political ideologies by focusing on China’s first residential community drug treatment center, called Sunlight. I argue that the migration of contemporary treatment therapies from one continent to another initiates certain practices that re-appropriate and remake drug-using bodies that live and work at Sunlight. Reviewing Sunlight ethnographically also allows for broader theoretical exploration. When bodies do not operate under the common trope of possessive individualism different forms of biopolitical (...) and therapeutic power are at play. In keeping with the theme of this special issue, this article begins with a discussion of why migration is a useful rubric for understanding how therapeutics and bodies become global entities and practices through the movement of three things: heroin, humanistic therapy and political ideology. It then presents an ethnographic slice of life at Sunlight to demonstrate how these practices and ideologies play out in the everyday. It finally returns to the question of why these therapies re-appropriate the post-socialist drug user’s body and psyche through a discussion of the term ‘psycho-sociability’. Psycho-sociability can be read as a demand for becoming a good biological citizen, as well as a theoretical rubric for explaining non-Western biopolitics. (shrink)

It is common to distinguish moral rules, reasons, or values that are agent-relative from those that are agent-neutral. One can also distinguish moral rules, reasons, or values that are moment-relative from those that are moment-neutral. In this article, I introduce a third distinction that stands alongside these two distinctions—the distinction between moral rules, reasons, or values that are patient-relative and those that are patient-neutral. I then show how patient-relativity plays an important role in several moral theories, gives (...) us a better understanding of agent-relativity and moment-relativity, and provides a novel objection to Derek Parfit’s “appeal to full relativity” argument. (shrink)

After COVID-19 first began to spread in the United States, dentists developed new guidelines that limited whom they could treat under these emergency conditions. Patients who faced greater limits to accessing treatment included children. Using a case of a child who was not able to access treatment, I discuss how careproviders might best seek to maintain their emotional bonding with patients and their loved ones, even if they must turn them down for an intervention.I also address whether and when (...) to give patients and their loved ones warning that access to treatment could be limited, using illness caused by COVID-19 as an example of how careproviders may better anticipate patients’ needs at all times.Finally, I discuss careproviders’ needs. I suggest that medical professionals’ culture should make it as easy as possible for them to acknowledge their feelings of vulnerability, so that they may better determine, in times of disaster, whether they should treat or triage patients. Careproviders who triage may choose to share with patients and loved ones that they also feel pain when they deny patients an intervention. (shrink)

Patient and citizen participation is now regarded as central to the promotion of sustainable health and health care. Involvement efforts create and encounter many diverse ethical challenges that have the potential to enhance or undermine their success. This article examines different expressions of patient and citizen participation and the support health ethics offers. It is contended that despite its prominence and the link between patient empowerment and autonomy, traditional bioethics is insufficient to guide participation efforts. In addition, (...) the turn to a “social paradigm” of ethics in examinations of biotechnologies and public health does not provide an account of values that is commensurable with the pervasive autonomy paradigm. This exacerbates rather than eases tensions for patients and citizens endeavoring to engage with health. Citizen and patient participation must have a significant influence on the way we do health ethics if its potential is to be fulfilled. (shrink)

Background: Patient participation in clinical ethics support services has been marked as an important issue. There seems to be a wide variety of practices globally, but extensive theoretical or empirical studies on the matter are missing. Scarce publications indicate that, in Europe, patient participation in CESS varies from region to region, and per type of support. Practices vary from being non-existent, to patients being a full conversation partner. This contrasts with North America, where PP seems more or (...) less standard. While PP seems to be on the rise in Europe, there is no data to confirm this. This study sought a deep understanding of both habits and the attitudes towards PP in the Netherlands, including respondents’ practical and normative perspectives on the matter. Methods and Results: We developed a national survey on PP for Dutch CESS staff. Our survey comprised a total of 25 open and close-ended questions, focused on four topics related to PP goals of CESS, status quo of PP, ideas and ideals concerning PP, and obstacles for PP. Discussion: The four most important findings were that: Patient participation in Dutch CESS is far from standard. Views on patient participation are very much intertwined with the goals of ethics support. Hesitations, fears and perceived obstacles for PP were not on principle and Most respondents see PP as a positive opportunity, yet requiring additional training, practical guidance and experience. Conclusions: Various normative reasons require PP. However, PP seems far from standard and somewhat rare in Dutch CESS settings. Our respondents did not raise many principled objections to PP. Instead, reasons for the lack of PP are intertwined with viewpoints on the goals of CESS, which seemingly focus on supporting health care professionals. Training and practical guidance was thought to be helpful for gaining experience for both CESS staff and HCPs. (shrink)

Despite the ubiquity of healthcare simulation and the humanities in medical education, the two domains of learning remain unintegrated. The stories suffused within healthcare simulation have thus remained unshaped by the developments of narrative medicine and the health humanities. Healthcare simulation, in turn, has yet to utilize concepts like co-construction and narrative competence to enrich learners’ understanding of patient experience alongside their clinical competencies. To create a conceptual bridge between these two fields (including narrative-based inquiry more broadly), we (...) redescribe narrative competence via Ronald Heifetz’s distinction of “technical” and “adaptive” challenges outlined in his adaptive leadership model. Heifetz, we argue, enriches learners’ self-understanding of the unique demands of cultivating narrative competence, which can be both elucidated on the page and tested within the charged yet supportive simulation environment. We introduce Co-constructive Patient Simulation (CCPS) to demonstrate how working with simulated patients can support narrative work by drawing on the clinical vicissitudes of learners in the formulation and enactment of case studies. The three movements of CCPS—resensing, retelling, and retooling—told through learner experiences, describe the affinities and divergences between narrative medicine’s sequence of attention, representation, and affiliation; Montello’s three forms of narrative competence (departure, performance, change), and Heifetz’s three steps (observe, interpret, and intervene) of adaptive leadership. (shrink)

Competent patients’ refusals of nursing care do not yet have the legal or ethical standing of refusals of life-sustaining medical therapies such as mechanical ventilation or blood products. The case of a woman who refused turning and incontinence management owing to pain prompted us to examine these situations. We noted several special features: lack of paradigm cases, social taboo around unmanaged incontinence, the distinction between ordinary versus extraordinary care, and the moral distress experienced by nurses. We examined this case on (...) the merits and limitations of five well-known ethical positions: pure autonomy, conscientious objection, paternalism, communitarianism, and feminism. We found each lacking and argue for a ‘negotiated reliance’ response where nurses and others tread as lightly as possible on the patient’s autonomy while negotiating a compromise, but are obligated to match the patient’s sacrifice by extending themselves beyond their usual professional practice. (shrink)

This article discusses the rights of patients who are attending hospital for the most common laboratory examinations and who may also be taking part in research studies. A distinction is made between five kinds of rights to: protection of privacy, physical integrity, mental integrity, information and self-determination. The data were collected ( n = 204) by means of a structured questionnaire specifically developed for this study in the clinical chemistry, haematological, physiological and neurophysiological laboratories of one randomly selected university hospital (...) in Finland. The analysis of the data was statistical. On the whole, patients’ rights were realized reasonably well. This was most particularly the case with protection of privacy, as well as with the rights of physical and mental integrity. The rights to information and self-determination were less well realized. There are various steps that health care professionals and organizations can take to make sure that patients can enjoy their full rights, by counselling the patient, by giving opportunities to plan the examinations in advance, and by arranging a sufficient number of small examination rooms. (shrink)

With Ukraine as its subtext, this pamphlet-like text considers the recent U-turns of global reality and the need for well-meant universalist (pamphilic) ends. Such ends impel reconsideration of the standard educational-philosophical view on national affect, state sovereignty and international relations. After indicating interconnections of these issues with ecological and nuclear catastrophe, I discuss the argument that post-humanist educational theory has failed to critique the full and inherent educational complicities in the current global situation. While I agree with such diagnostics, (...) I argue that, instead of essentializing educational complicities, we may explore education as open to catastrophe in its double meaning of ‘disaster’ and ‘radical turn’. (shrink)

This article discusses the rights of patients who are attending hospital for the most common laboratory examinations and who may also be taking part in research studies. A distinction is made between five kinds of rights to: protection of privacy, physical integrity, mental integrity, information and self-determination. The data were collected (n = 204) by means of a structured questionnaire specifically developed for this study in the clinical chemistry, haematological, physiological and neurophysiological laboratories of one randomly selected university hospital in (...) Finland. The analysis of the data was statistical. On the whole, patients’ rights were realized reasonably well. This was most particularly the case with protection of privacy, as well as with the rights of physical and mental integrity. The rights to information and self-determination were less well realized. There are various steps that health care professionals and organizations can take to make sure that patients can enjoy their full rights, by counselling the patient, by giving opportunities to plan the examinations in advance, and by arranging a sufficient number of small examination rooms. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Full Collection of Personal NarrativesZohar Lederman, Ola Ziara, Rachel Coghlan, Oksana Sulaieva, Anna Shcherbakova, Oleksandr Dudin, Vladyslava Kachkovska, Iryna Dudchenko, Anna Kovchun, Lyudmyla Prystupa, Yuliya Nogovitsyna, Ghaiath Hussein, Kathryn Fausch, P. P. Kyaw, Ayesha Ahmad, Richard W Sams II, Handreen Mohammed Saeed, Artem Riga, Ryan C. Maves, Elizabeth Dotsenko, Irina Deyneka, Eva V. Regel, and Vita Voloshchuk• An Unsettling Affair• How We Keep Caring While Walking Through Our (...) Pain• Adjusting Laboratory Practices to the Challenges of Wartime• Why We Stay• A Semi-Personal Story from a Ukrainian NGO Professional (or a Semi-Professional Story from a Ukrainian Person) Living through the War• When Ethics Survives Where People Do Not: A Story From Darfur• Burma’s Healthcare Under Fire: My Experience as an Exiled Medical Professional• When a Conflict Collapses on a Child: An (Aborted) Medical Evacuation of a Hazara Toddler During the Kabul Airport Blast and the Taliban Takeover• The Vagaries and Vicissitudes of War• Providing Care to a Potential Aggressor: An Ethical Dilemma• One Surgeon’s Experience During Armed Conflict in Ukraine• The Limits of Our Obligations• A Liberating Breath• Soldiers of the Invisible Front: How Ukrainian Therapists Are Fighting for the Mental Health of the Nation Under Fire• Stories of Families with Chronically Ill Pediatric Patients during the War in UkraineCopyright © 2023 Johns Hopkins University Press... (shrink)

The aims of this paper are to: (1) identify the best framework for comprehending multidimensional impact of deep brain stimulation on the self; (2) identify weaknesses of this framework; (3) propose refinements to it; (4) in pursuing (3), show why and how this framework should be extended with additional moral aspects and demonstrate their interrelations; (5) define how moral aspects relate to the framework; (6) show the potential consequences of including moral aspects on evaluating DBS’s impact on patients’ selves. Regarding (...) (1), I argue that the pattern theory of self can be regarded as such a framework. In realizing (2) and (3), I indicate that most relevant issues concerning PTS that require resolutions are ontological issues, including the persistence question, the “specificity problem”, and finding lacking relevant aspects of the self. In realizing (4), I identify aspects of the self not included in PTS which are desperately needed to investigate the full range of potentially relevant DBS-induced changes—authenticity, autonomy, and responsibility, and conclude that how we define authenticity will have implications for our concept of autonomy, which in turn will determine how we think about responsibility. Concerning (5), I discuss a complex relation between moral aspects and PTS—on one hand, they serve as the lens through which a particular self-pattern can be evaluated; on the other, they are, themselves, products of dynamical interactions of various self-aspects. Finally, I discuss (6), demonstrating novel way of understanding the effects of DBS on patients’ selves. (shrink)

Background: Over the last decade, new healthcare policies are transforming healthcare practices towards independent living and self-care of older people and people with a chronic disease or disability within the community. For professional caregivers in home care, such as nurses, this requires a shift from a caring attitude towards the promotion of patient autonomy. Aim: To explore how nurses in home care deal with the transformation towards fostering patient autonomy and self-care. Research design and context: A case study (...) was conducted in a professional development course for home care nurses, including participant observations and focus groups. The theoretical notion of ‘relational agency’ and the moral concept of ‘practices of responsibility’ were used to conduct a narrative analysis on the nurses’ stories about autonomy. Participants: Eight nurses, two coaches and two university lecturers who participated in the learning circle. Ethical considerations: Informed consent was sought at the start of the course and again, at specific moments during the course of the learning circle. Findings: Three main themes were found that expressed the moral demands experienced and negotiated by the nurses: adapting to the person, activating patients’ strengths and collaboration with patients and informal caregivers. Discussion: On a policy and organisational level, the moral discourse on patient autonomy gets intertwined with the instrumental discourse on healthcare budget savings. This is manifested in the ambiguities the nurses face in fostering patient autonomy in their daily home care practice. To support nurses, critical thinking, moral sensitivity and trans-professional working should be part of their professional development. Conclusion: The turn towards autonomy in healthcare raises moral questions about responsibilities for care. Promoting patient autonomy should be a collaborative endeavour and deliberation of patients, professional and informal caregivers together. (shrink)

The systemic difficulties of health care in the USA have brought to light another issue in nurse—patient advocacy — those who require care yet have inadequate or non-existent access. Patient advocacy has focused on individual nurses who in turn advocate for individual patients, yet, while supporting individual patients is a worthy goal of patient advocacy, systemic problems cannot be adequately addressed in this way. The difficulties nurses face when advocating for patients is well documented in the (...) nursing literature and I argue that, through collective advocacy, professional nursing associations ought to extend the reach of individual nurses in order to address systemic problems in health care institutions and bureaucracies. (shrink)

An elderly patient in his early eighties is hospitalized in a long-term facility, with advanced Alzheimer disease. He is otherwise relatively strong and free from other life-threatening conditions, except for the fact that he has difficulties swallowing. After several episodes of acute aspiration pneumonia doctors prescribe “strict fast”: only hydration through an IV catheter should be administered during the night, in order to relieve the feeling of hunger, provide comfort, and stave off death. The patient is surrounded by (...) a warm and extremely close-knit Mediterranean family. His wife and six adult children take turns feeding him properly mixed food twice a day and prefer to take the risk of causing another... (shrink)

The fiduciary nature of the patient-physician relationship requires clinicians to act in the best interest of their patients. Patients are vulnerable due to their health status and lack of medical knowledge, which makes them dependent on the clinicians’ expertise. Competent patients, however, may reject the recommendations of their physician, either refusing beneficial medical interventions or procedures based on their personal views that do not match the perceived medical indication. In some instances, the patients’ refusal may jeopardize their health or (...) life but also compromise the clinician’s moral responsibility to promote the patient’s best interests. In other words, health professionals have to deal with patients whose behavior and healthcare decisions seem counterproductive for their health, or even deteriorate it, because of lack of knowledge, bad habits or bias without being the patients’ free voluntary choice. The moral dilemma centers on issues surrounding the limits of the patient’s autonomy and the clinician’s role to promote the well-being of the patient. In this paper we argue that the use of manipulative strategies, albeit considered beneficent, defeats the purpose of patient education and therefore should be rejected; and the appropriate strategy is to empower patients through patient education which enhances their autonomy and encourages them to become full healthcare partners as opposed to objects of clinical intervention or entities whose values or attitudes need to be shaped and changed through education. First, we provide a working definition of the concept of patient education and a brief historical overview of its origin. Second, we examine the nature of the patient-physician relationship in order to delineate its boundaries, essential for understanding the role of education in the clinical context. Third, we argue that patient education should promote self-rebiasing, enhance autonomy, and empower patients to determine their therapeutic goals. Finally, we develop a moral framework for patient education. (shrink)

Therapeutic misconception involves the failure of subjects either to understand or to incorporate into their own expectations the distinctions in nature and purpose of personally responsive therapeutic care, and the generic relationship between subject and investigator which is constrained by research protocols. Researchers cannot disregard this phenomenon if they are to ensure that subjects engage in research on the basis of genuine informed consent. However, our presumption of patient autonomy must be sustained unless we have compelling evidence of serious (...) misunderstanding. This article argues that the mere expression of aspects of therapeutic misconception should not necessarily displace the presumption of subject autonomy or undermine ethical inclusion in research for at least three reasons. First, some interpretations of the empirical data do not suggest misunderstanding. Second, assessment of misestimation and optimism are delicate and value-laden, and turn quickly from questions of autonomy to questions of judgment. Third, incomplete understanding may yet be sufficient to allow a subject to engage in a substantially autonomous decision-making process. Our point is not to dismiss the possibility of genuine therapeutic misconception, but to question its frequency and fatality to the consent process. (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)

Show more ▾ There are various dichotomies in Kant’s philosophy: sensibility vs. rationality, nature vs. freedom, cognition vs. morality, noumenon vs. phenomenon, among others. There are also different ways of mediating these dichotomies, which is the systematic undertaking of Kant’s Critique of the Power of Judgment. One of the most important concepts in this work is the sublime, which exemplifies the connections between the different dichotomies; this fact means the concept’s construction is full of tension. On the one hand, (...) as a pure reflection of aesthetic judgment the sublime must be without interest or purpose, but on the other hand it is “based on the concept of reason” (KU AA:292). On the one hand, the sublime “represents merely the subjective play of the powers of the mind (imagination and reason) as harmonious” (KU AA5:258), but on the other hand, reason “exercises dominion over sensibility” and the imagination is “purposively determined in accordance with a law” of reason (KU AA5:268f). Taking into account these problems concerning the essential definition the sublime, this paper will first illustrate how the sublime embodies the a priori principle of aesthetic judgment through contrasting the judgment of the sublime with the judgment of taste in order to establish a basic logical frame for the judgment of the sublime. Second, this paper redefines the boundary between the mathematically and dynamically sublime in order to reveal both the coexistence of contemplation and movement within the sublime and the unrevealed function of reason and imagination. Finally, contrasting the sublime with moral feeling, this paper elaborates the turning-structure (from sensibility to rationality and from object-intuition to idea-exhibition) of the sublime. (shrink)

The passage of the Patient Protection and Affordable Care Act in March 2010 represents a significant turning point in the evolution of health care law and policy in the United States. By establishing a legal infrastructure that seeks to achieve universal health insurance coverage in the United States, the ACA targets some of the major impediments to accessing needed health care for millions of Americans and by extension attempts to strengthen the health system to support key determinants of health. (...) Yet, like many newly passed legislative provisions, the ultimate effects and significance of the ACA remain uncertain. Those charged with implementing the ACA face formidable obstacles — indeed, some of the same obstacles that have been erected to impede other major pieces of social legislation in the past — including entrenched political opposition, constitutional challenges, and what will likely be a prolonged struggle over the content and direction of how the law is implemented. As these debates continue, it is nevertheless important to begin to assess the impact that the ACA has already had on health law in the United States and to consider the likely effects that the law will have on public health going forward. (shrink)

Over one hundred years after Max Weber delivered his lecture “Science as a Vocation,” his description of the work of the physician in a disenchanted world still resonates. As a chronically ill patient who interacts with physicians frequently, I struggle with reconciling my understanding of my ill body with how my physician makes sense of my illness. My diagnosis created an existential crisis that caused me to search for meaning in my embodied experience, but I soon learned there is (...) little room for such a search within modern biomedicine. Instead, I turned to fine art to help me make sense of my ill body and its purpose in my life. With the aid of my printmaker sister, Darian Goldin Stahl, I have transformed the magnetic resonance images of my body into works of art, which help to re-enchant my body and give purpose to my illness. (shrink)

With advancing rank in medical training comes increased academic and clinical responsibility, including education and supervision of trainees and junior staff. When I became a senior postdoctoral fellow sub‐specializing in neonatology, I assumed the role of co‐attending in the neonatal intensive care unit. At that point in my training, I felt well prepared for the challenging task. I would be in charge, make decisions independently with the team, and supervise, as well as teach, the junior fellows, residents, and practitioners. In (...) short, I would assume full responsibility for the care of the patients, their families, and the medical team. My mentor, an experienced attending, would discuss every patient with me each day, but would otherwise stand in the shadows, available for help and guidance when needed. On the very first day, one of the smaller premature babies on our service started having difficulty breathing, and it was soon clear that she would need to have her endotracheal tube reinserted. (shrink)

This article discusses Fin de Copenhague, a Situationist book experiment from 1957 by Asger Jorn and Guy Debord. By way of a contextualizing archival study with special attention to Jorn’s contemporaneous book project Pour la forme, the article demonstrates that the Russian avant-garde book was a key influence if also a point of critical departure. On this reading, Fin de Copenhague marks a turn away from the unbridled technological optimism of the historical avant-garde. In its material implications and aesthetic (...) choices, Fin de Copenhague draws attention to crucial changes in the capitalist mode of production and challenges the then nascent discourse about “full automation.”. (shrink)

In a recent paper, Charles Foster argued that the epistemic uncertainties surrounding prolonged disorders of consciousness make it impossible to prove that the withdrawal of life-sustaining treatment can be in a patient’s best interests and, therefore, the presumption in favour of the maintenance of life cannot be rebutted. In the present response, I argue that, from a legal perspective, Foster has reached the wrong conclusion because he is asking the wrong question. According to the reasoning in two leading cases (...) —Bland and James —the principle of respect for autonomy creates a persuasive presumption against treatment without consent. Therefore, it is the continuation of treatment that requires justification, rather than its withdrawal. This presumption also works as the tiebreaker determining that treatment should stop if there is no persuasive evidence that its continuation is in the best interests of the patient. The presumption in favour of the maintenance of life, on the other hand, should be understood as an evidential presumption on a factual issue that is assumed to be true if unchallenged. However, the uncertainties regarding PDOC actually give reasons for displacing this evidential presumption. Consequently, decision-makers will have to weigh up the pros and cons of treatment having the presumption against treatment without consent as the tiebreaker if the evidence is inconclusive. In conclusion, when the right question is asked, Foster’s argument can be turned on its head and uncertainties surrounding PDOC weigh in to justify the interruption of treatment in the absence of compelling contrary evidence. (shrink)

This book approaches ethical and legal issues in medicine from the patient's viewpoint and argues that many patients do not want the full burden of decision making that contemporary bioethics has thrust upon them.

Over the past 35 years, patients have suffered from a largely hidden epidemic of side effects from drugs that usually have few offsetting benefits. The pharmaceutical industry has corrupted the practice of medicine through its influence over what drugs are developed, how they are tested, and how medical knowledge is created. Since 1906, heavy commercial influence has compromised congressional legislation to protect the public from unsafe drugs. The authorization of user fees in 1992 has turned drug companies into the FDA's (...) prime clients, deepening the regulatory and cultural capture of the agency. Industry has demanded shorter average review times and, with less time to thoroughly review evidence, increased hospitalizations and deaths have resulted. Meeting the needs of the drug companies has taken priority over meeting the needs of patients. Unless this corruption of regulatory intent is reversed, the situation will continue to deteriorate. We offer practical suggestions including: separating the funding of clinical trials from their conduct, analysis, and publication; independent FDA leadership; full public funding for all FDA activities; measures to discourage R&D on drugs with few, if any, new clinical benefits; and the creation of a National Drug Safety Board. (shrink)

Deontic modals are the topic of my dissertation. All deontic modals, yes, but justification in particular, and epistemic justification even more specifically. Deontic modals operate upon performances—they appraise performances. Positively appraised, a performance is appropriate, decent, justifiable, right, permissible, or proper; negatively appraised, inappropriate, indecent, unjustifiable, wrong, impermissible, or improper. Belief and knowledge and performances in exactly the same sense that action and intention are performances: all are products of powers that are in some sense responsive to reasons. The principal (...) difference is the direction of fit between mind and world. Knowledge and belief the product of cognitive powers aimed at adapting mind to world, action and intention the product of conative powers aimed at adapting world to mind. All are normatively evaluable and the characteristic normative appraisal of each is deontic. Epistemology, ethics, and rational choice all investigate the nature of deontic modals, differing only insofar as the central aims are epistemic, moral, or prudential in nature. In this sense, the general theory of deontic modals is the parent to epistemology, ethics, and rational choice. My project is to develop and defend a schematic theory of justification. I achieve this end by developing and defending a general theory of deontic modalities. Riffing on two pithy turns of phrase, the deontic theory may be tersely sloganized: value first and one must do the best one can. It is a teleological theory that defines all deontic concepts from the theoretically foundational notions of ability and value. Roughly, a belief is epistemically justifiable if, and only if, it is part of an epistemically optimific belief set the agent is able to have. Roughly, an act is morally justifiably if, and only if, it is part of a morally optimific action set the agent is able to perform. My pet interest is in the former. The resultant framework is enormously fruitful, especially in epistemology. (shrink)

As in other areas of medical practice, relatives accompany patients to genetic consultations. However, unlike in other areas, the consultations may be relevant to the relatives’ health because they may be at risk of developing the same genetic condition as the patient. The presence of relatives in genetic consultation may affect the decision‐making process and it raises questions about the perception of patient autonomy and the way it is practiced in genetics. However, these issues have not been examined (...) in previous empirical studies. This article aims to fill this gap by reporting findings from a qualitative study with clinicians working in the area of inherited breast cancer. The findings indicate that family presence has an impact on the patient's decisions to undergo genetic testing and preventative operations when she is diagnosed as a carrier. The findings further indicate that, unlike in other areas of medical practice, blood relatives who are present in consultations are perceived by clinicians as patients or potential patients, and this in turn increases their involvement in discussions in the consultation room. Finally, the findings indicate that in genetics, a relational approach to autonomy is applied. Decisions are made in a social context, where the relatives’ views are heard and taken into account. The findings suggest that the conventional bioethical approach to autonomy, which perceives the decision‐making unit as comprising a clinician and an individual patient, is challenged in genetics. The findings thus suggest that bioethicists, lawyers and policy‐makers should consider whether this individualistic approach is still valid and applicable. (shrink)

Consequentialism is often criticized for rendering morality too pervasive. One somewhat neglected manifestation of this pervasiveness is the obligatory self-benefit objection. According to this objection, act-consequentialism has the counterintuitive result that certain self-benefitting actions turn out, ceteris paribus, to be morally obligatory rather than morally optional. The purposes of this paper are twofold. First, I consider and reject four strategies with which consequentialists might answer the obligatory self-benefit objection. Despite the apparent consequentialist credentials of these answers, none of these (...) strategies is adequate because each fails to justify agents failing to benefit themselves when benefiting themselves would be otherwise required by the imperative that overall good meet a certain threshold. Second, I argue that no plausible consequentialist response to this objection is forthcoming because consequentialism denies the central axiological fact propelling this objection, namely, that the self possesses a normative architecture relating the self as agent and self as patient. This architecture, I propose, justifies the option not to benefit oneself. (shrink)

BackgroundInternationally, patient access to notes is increasing. This has been driven by respect for patient autonomy, often recognised as a primary tenet of medical ethics: patients should be able to access their records to be fully engaged with their care. While research has been conducted on the impact of patient access to outpatient and primary care records and to patient portals, there is no such review looking at access to hospital medical records in real time, nor (...) an ethical analysis of the issues involved in such a change in process.MethodsThis study employed a systematic review framework in two stems, to integrate literature identified from two searches: Medline, CINAHL and Scopus databases were conducted, (for (1) hospitalised patients, patient access to records and its effects on communication and trust within the doctor-patient relationship; and (2) patient access to medical records and the ethical implications identified). The qualitative and quantitative results of both searches were integrated and critically analysed.Results3954 empirical and 4929 ethical studies were identified; 18 papers representing 16 studies were identified for review (12 empirical and 6 ethical). The review reveals a consensus that our current approach to giving information to patients – almost exclusively verbally – is insufficient; that patient access to notes is a welcome next step for patient-centred care, but that simply allowing full access, without explanation or summary, is also insufficient. Several ethical implications need to be considered: increased information could improve patient trust and knowledge but might transfer an (unwelcome) sense of responsibility to patients; doctors and patients have conflicting views on how much information should be shared and when; sharing written information might increase the already significant disparity in access to health care, and have unforeseen opportunity costs. The impact on medical practice of sharing notes in real time will also need to be evaluated.ConclusionsThe review presents encouraging data to support patient access to medical notes. However, sharing information is a critical part of clinical practice; changing how it is done could have significant empirical and ethical impacts; any changes should be carefully evaluated. (shrink)