McCoy and colleagues (2023) offer a reflective framework for data ethics and governance with several historical bioethics principles as a foundation. Their framework is one among a plethora of othe...

Being a patient and living a life -- Clinical space and traits of healing -- False starts and frequent failures -- Three journeys : A.'Ibuprofen and love', B. 'Staying tuned up', C. 'We all want the same things' -- Being a patient : the moral field -- Rethinking healthcare ethics : the patient's moral authority.

In lieu of an abstract, here is a brief excerpt of the content:Stepping Off the Edge of the Earth:A bariatric patient’s journey out of obesityNikki MassieI have been overweight my entire life. When I was born—three weeks early—I weighed 9 lbs., 3 oz. I proceeded to trend on the high end of the weight percentile for my age. By the time I was 14 years old I’d surpassed 200 lbs. By the time I graduated high school I’d hit (...) 250 lbs.Even today, after losing a considerable amount of weight from having Roux–en–Y gastric bypass surgery, I am still considered overweight according to the body mass index.All this is to say that the way I think about my health, my body and my life is very much from the perspective of someone who has never experienced the so–called condition of being “normal.”Enough is EnoughI’ve been asked many times how I decided to have bariatric surgery. The answer isn’t simple. Because I’d been overweight all my life, the notion of being anything but overweight seemed a bit absurd to me. Not absurd as in, “I would not be happy if I were smaller” but more like, “I don’t know if this could ever happen for me and, if it did, who would I be?”Truth be told, I wasn’t entirely unhappy as an overweight woman. By the account of my primary care physician I also was not necessarily unhealthy for an overweight person. I didn’t have high blood pressure or diabetes (I wasn’t even pre–diabetic). My heart seemed to work fine. I was just very, very large.However, I’d been large (or larger than others) my entire life. In many ways my very identity was inextractable from that fact. While I can’t speak for my entire culture, my experience as an African–American woman is one where women of size were not reviled, but celebrated. Being too thin was always presented to me as a negative cultural value, I believe because it was associated with drug use.That means that growing up I didn’t have some of the experiences other obese people had. There were a few people who teased me but they were the exception, not the norm. I don’t recall being lonely because of my size. I dated avidly throughout my adolescence. I was asked to, and went to, both my proms.I proceeded into young adulthood with a few bumps along the way. I suffered a bout of depression in my sophomore year of college and just after my 21st birthday I found the first signs of what would be massive hair loss from alopecia areata (although did not know that’s what it was at the [End Page 107] time). Otherwise, I was fairly healthy and no more or less happy than any other 21 year–old I knew.At age 22, I had my first child, a daughter. This was the beginning of an upward weight climb that took me from being very overweight into very obese. At age 21, I weighed about 240 lbs. (I am 5 ft. 8 inches tall). By the time I was 26 (and after I had a second daughter), I weighed in at 340 lbs.At this point I began to want to lose weight. I no longer liked the way I looked in pictures. My increased clothing size and cost depressed me even further. My attempts at dieting, however, failed miserably. I did seek help from my primary care physicians (I went through several throughout my young adulthood). Each time I’d be given a copy of the food pyramid and a pamphlet explaining the health benefits of losing weight.But how? How exactly does one lose weight? In my mind it was some strange combination of sadistic exercise and starvation. That’s what I saw in magazines. Women who ate the equivalent of one meal per day who exercised many hours a day. I had no desire to do either and so I continued on my trend upward.During that time my mother (now deceased) worried about my weight a lot. I’d... (shrink)

In this paper, we examine the case of psychedelic medicine for Alzheimer’s disease and related dementias (AD/ADRD). These “mind-altering” drugs are not currently offered as treatments to persons with AD/ADRD, though there is growing interest in their use to treat underlying causes and associated psychiatric symptoms. We present a research agenda for examining the ethics of psychedelic medicine and research involving persons living with AD/ADRD, and offer preliminary analyses of six ethical issues: the impact of psychedelics on autonomy and consent; (...) the impact of “ego dissolution” on persons experiencing a pathology of self; how psychedelics might impact caregiving; the potential exploitation of patient desperation; institutional review boards’ orientation to psychedelic research; and methods to mitigate inequity. These ethical issues are magnified for AD/ADRD but bear broader relevance to psychedelic medicine and research in other clinical populations. (shrink)

This article explores how Alzheimer’s disease caregivers struggle under the impact of a parent’s memory loss on their own personality. In particular, it analyses how caregivers perceive and, thus, present their experiences of the ever intensifying caregiving activity in terms of a ‘journey’. In doing so, this work takes into account both the patient’s continuing bodily as well as cognitive decline and its intricately linked influence on the caregiver’s physical and emotional stability. Equally, this study investigates how caregivers (...) portray memory loss, and how their portrayal fits into our conceptualisation of illness narratives and the culture of autobiographical writing. (shrink)

A revelatory new theory of consciousness that returns emotions to the center of mental life. For Mark Solms, one of the boldest thinkers in contemporary neuroscience, discovering how consciousness comes about has been a lifetime's quest. Scientists consider it the "hard problem" because it seems an impossible task to understand why we feel a subjective sense of self and how it arises in the brain. Venturing into the elementary physics of life, Solms has now arrived at an astonishing answer. In (...) The Hidden Spring, he brings forward his discovery in accessible language and graspable analogies. Solms is a frank and fearless guide on an extraordinary voyage from the dawn of neuropsychology and psychoanalysis to the cutting edge of contemporary neuroscience, adhering to the medically provable. But he goes beyond other neuroscientists by paying close attention to the subjective experiences of hundreds of neurological patients, many of whom he treated, whose uncanny conversations expose much about the brain's obscure reaches. Most importantly, you will be able to recognize the workings of your own mind for what they really are, including every stray thought, pulse of emotion, and shift of attention. The Hidden Spring will profoundly alter your understanding of your own subjective experience. (shrink)

In their target article, Peterson et al. discuss the intriguing prospect of using psychedelics as a treatment for patients with Alzheimer’s Disease and Related Dementias (AD/ADRD) (Peterson et al....

Values‐based practice is deemed essential for healthcare provision worldwide. In England, values‐based recruitment methods, such as multiple mini interviews (MMIs), are employed to ensure that healthcare students’ personal values align with the values of the National Health Service (NHS), which focus on compassion and patient‐centeredness. However, values cannot be seen as static constructs. They can be positively and negatively influenced by learning and socialisation. We have conceptualised students’ perceptions of their values over the duration of their education programme as (...) a ‘values journey’. The aim of this hermeneutic longitudinal focus group study was to explore the ‘values journey’ of student nurses and midwives, recruited through MMIs, across the 3 years of their education programme. The study commenced in 2016, with 42 nursing and midwifery students, originally recruited onto their programmes through multiple mini interviews. At the third and final point of data collection, 25 participants remained. Findings indicate that students' confidence, courage and sense of accountability increased over the 3 years. However, their values were also shaped by time constraints, emotional experiences and racial discrimination. We argue that adequate psychological support is necessary as healthcare students embark on and progress through their values journey, and propose a framework for this. (shrink)

Background: Empathy and moral courage are important virtues in nursing and nursing ethics. Hence, it is of great importance that nursing students and nurses develop their ability to empathize and their willingness to demonstrate moral courage. Research aim: The aim of this article is to explore third-year undergraduate nursing students’ perceptions and experiences in developing empathy and moral courage. Research design: This study employed a longitudinal qualitative design based on individual interviews. Participants and research context: Seven undergraduate nursing students were (...) interviewed during or immediately following their final clinical placement. Ethical considerations: The Norwegian Social Science Data Services (NSD) approved the study. Participants were informed that their participation was voluntary and were assured confidentiality. They were informed that they could withdraw from the study at any time, without providing reasons. Findings: Affective empathy seemed to be strong among third-year undergraduate nursing students. However, they tried to handle the situations in a ‘professional’ way, and to balance their emotions. At the same time, they expressed how difficult it can be to show moral courage when confronted with poor patient care. In addition, they spoke about a lack of role models during clinical practice and supervision. Conclusions: Undergraduate nursing students are in a vulnerable position throughout their journey to become professional and to develop empathy and moral courage. The professional socialisation and forming of professional empathy and moral courage among nursing students, may be seen as a complex interaction of formal and hidden curriculum, where role models play an important role. We argue that the main theme ‘Vulnerable students – a journey towards professional empathy and moral courage’ may cover the longitudinal project as a whole. This vulnerability is something both teachers and supervisors should be aware of when following up with students in their clinical placements. (shrink)

In _Awakening the Dreamer: Clinical Journeys_, Philip Bromberg continues the illuminating explorations into dissociation and clinical process begun in _Standing in the Spaces_. Bromberg is among our most gifted clinical writers, especially in his unique ability to record peripheral variations in relatedness - those subtle, split-second changes that capture the powerful workings of dissociation and chart the changing self-states that analyst and patient bring to the moment. For Bromberg, a model of mind premised on the centrality of self-states and (...) dissociation not only offers the optimal lens for comprehending and interpreting clinical data; it also provides maximum leverage for achieving true intersubjective relatedness. And this manner of looking at clinical data offers the best vantage point for integrating psychoanalytic experience with the burgeoning findings of contemporary neuroscience, cognitive and developmental psychology, and attachment research. Dreams are approached not as texts in need of deciphering but as means of contacting genuine but not yet fully conscious self-states. From here, he explores how the patient's "dreamer" and the analyst's "dreamer" can come together to turn the "real" into the "really real" of mutative therapeutic dialogue. The "difficult," frequently traumatized patient is newly appraised in terms of tensions within the therapeutic dyad. And then there is the "haunted" patient who carries a sense of preordained doom through years of otherwise productive work - until the analyst can finally feel the patient's doom as his or her own. Laced with Bromberg's characteristic honesty, humor, and thoughtfulness, these essays elegantly attest to the mind's reliance on dissociation, in both normal and pathological variants, in the ongoing effort to maintain self-organization. _Awakening the Dreamer_, no less than _Standing in the Spaces_, is destined to become a permanent part of the literature on therapeutic process and change. (shrink)

The Odyssey, Paradise Lost, The Canterbury Tales: great literature can be read by anyone, with a little help. The eminent British philosopher Anthony O’Hear leads the way with this captivating journey through two-and-a-half millennia of books as powerful, thrilling, erotic, politically astute, and awe-inspiring as any modern bestseller. O’Hear begins with Homer, whose poems of epic struggle have made him the father of Western literature. After Greek tragedy, Plato, and Virgil’s Aeneid comes Ovid, whose encyclopedic Metamorphoses is an inexhaustible (...) source for European art and literature. Via Saint Augustine, O’Hear reaches Dante and his terrifying and sublime Divine Comedy. Chaucer, Shakespeare, Cervantes, Milton, Pascal, Racine, and finally Goethe complete the cast list. In each case, O’Hear patiently draws out themes, focuses on key passages, and explains why they are important. Not simply a grand work of reference, The Great Books is also a narrative history shot through with a love of literature and the author’s deeply held belief in its power to enrich and enliven everyone’s world. (shrink)

The patient, an 89-year-old man—let’s call him Mr. Smith—had no known relatives, friends, or advance directives. He was a bright man and served as a scientist in the Reagan administration.

Effective doctor patient relationships are predicated on doctors' relational engagement and affective/holistic communication with the patients. On the contrary, the contemporary healthcare and patient-clinician communication are at odds with the desirable professional goals, often resulting in dehumanization and demoralization of patients. Besides denigrating the moral agency of a patient such apathetic interactions and unprofessional approach also affect the treatment and well-being of the sufferer. Foregrounding multifaceted doctor-patient relationships, graphic pathographies are a significant cultural resource which recreate (...) the embodied moment of clinical encounters as they also lay bare qualitative tensions between patient' illness experience with doctor's professional understanding of the same. Taking these cues, the present article drawing theoretical postulates of Rita Charon, Deborah Lupton, and Havi Carel close reads Peter Dunlap-Shohl's My Degeneration: A Journey Through Parkinson's, Brian Fies' Mom's Cancer, and Stan Mack's Janet & Me: An Illustrated Story of Love and Loss to investigate the nature of doctor-patient relationship vis-à-vis communication and the implications of bad doctoring/communicative practices on patient identity and emotions. Furthermore, the article also examines the aesthetic and functional role of comics in bringing into relief the graphically mediated doctor-patient relationship. (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)

Effective communication and interpersonal skills have long been recognized as fundamental to the delivery of quality health care. However, there is mounting evidence that the pressures of communication in high stress work areas such as hospital emergency departments present particular challenges to the delivery of quality care. A recent report on incident management in the Australian health care system cites the main cause of critical incidents, as being poor and inadequate communication between clinicians and patients. This article presents research that (...) describes and analyses spoken interactions between health care practitioners and patients in one ED of a large, public teaching hospital in Sydney, Australia. The research aimed to address the challenges and critical incidents caused by breakdowns in communication that occur between health practitioners and patients and by refining and extending knowledge of discourse structures, to identify ways in which health care practitioners can enhance their communicative practices thereby improving the quality of the patient journey through the ED. The research used a qualitative ethnographic approach combined with discourse analysis of audio-recorded interactions. Some key findings from the analysis of data are outlined including how the absence of information about processes, the pressure of time within the ED, divergent goals of clinicians and patients, the delivery of diagnoses and professional roles impact on patient experiences. Finally, the article presents an in-depth linguistic analysis on interpersonal and experiential patterns in the discursive practices of patients, nurses and doctors. (shrink)

According to the biomedical model of medicine, the subject of the illness event is the pathology rather than the person diagnosed with the disease. In this view, a body-self becomes a ‘patient’ body-object that can be enrolled in a therapeutic protocol, investigated, assessed, and transformed. How can it be possible for cancer patients to make sense of the opposite dimensions of their body-self and their body-diseased-object? Could a creative embodied approach enable the coping with trauma tied to the experience (...) of illness? By applying a phenomenological approach and auto-ethnographic analysis to the experience of cancer, this visual exploration provides support for rethinking the cancer event through a performative perspective. This work previews images and video material collected over ten years of haematological treatments, video dance performances and physical explorations. This work displays how processes of healing can be set in motion by creative embodied practices, physical explorations and unexpected journeys. By resisting the biomedical model and allowing the emergence of new meanings, it illustrates how dance and performative practices offer ground for transformation. (shrink)

The journey through the history of nursing, and its philosophical and political influences of the moment, contextualizes the interest that arose about the nurse–patient relationship after World War II. The concept has always been defined as a relationship but, from a phenomenological approach based on a historical, philosophical, psychological and sociological cosmology, it is possible to re‐conceptualize it as ‘caring interaction’. Under the vision of aesthetics and sociopoetics, the object of nursing care is the most delicate, vulnerable and (...) unrepeatable raw material: the person, whose feelings and reciprocity, which must be considered. In addition, it involves the adoption of the socio‐critical paradigm, as it considers the importance of actively involving the person, not just patient anymore, or their family in the nursing cares, optimizing the reciprocity inherent to this interactivity. In short, our philosophical and epistemological approach to the concept of nurse–patient relationship proposes a new conceptualization of it as a caring interaction. (shrink)

Contributing to renewed scholarly interest in R. D. Laing and his circle, and in the radical therapeutic community of Kingsley Hall, London, this article offers the first article-length reading of Mary Barnes’ and Joseph Berke’s Mary Barnes: Two Accounts of a Journey through Madness. This text offers views of anti-psychiatry ‘on the ground’ that critique the 1960s utopianism of Laing’s championing of madness as a metanoic, quasi-psychedelic voyage. Barnes’ story, too, reveals tensions within the anti-psychiatric movement. Moving beyond existing (...) criticism of the text, Barnes, it is argued here, emerges as far more than an exemplary patient, victim or anti-psychiatric puppet. Particular attention is paid in this reading of Two Accounts to the following: the ways in which the spiritually inclined Barnes and the psychoanalytic Berke differ in this dual narrative text; the ways in which each differs from Laing; the metaphor of the journey; and the setting of Barnes’ story in the often conflicted, experimental household of Kingsley Hall. (shrink)

Why would a successful physician who has undergone seven years of rigorous medical training take the trouble to seek out and learn to practice alternative methods of healing such as homeopathy and Chinese medicine? From Doctor to Healer answers this question as it traces the transformational journeys of physicians who move across the philosophical spectrum of American medicine from doctor to healer. Robbie Davis-Floyd and Gloria St. John conducted extensive interviews to discover how and why physicians make the move to (...) alternative medicine, what sparks this shift, and what beliefs they abandon or embrace in the process. After outlining the basic models of American health care-the technocratic, humanistic, and holistic-the authors follow the thoughts and experiences of forty physicians as they expand their horizons in order to offer effective patient care. The book focuses on the radical shift from one end of the spectrum to the other-from the technocratic approach to holism-made by most of the interviewees. Because many American physicians find such a drastic change too threatening, the authors also address the less radical transition to humanism-a movement toward compassionate care arising from within the medical system. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Buddhist-Christian Studies 23 (2003) 39-41 [Access article in PDF] Wishing I Were Here:Postcards from My Religious Journey Grace G. Burford Prescott College Summer 1966, Bowling Green, Kentucky An energetic ten-year-old, sitting on a red-cushioned wooden pew in a Presbyterian church leans over to her mother to whisper, "Which is it? Are we supposed to be like little children, or leave behind our childish ways?" After church, her mother (...) does a reasonably good job at answering the question.Later, perhaps even later that day, this little girl has gleefully exchanged her dress and going-to-church shoes for a cotton shirt and shorts and blue Keds, and has escaped to her favorite spot in the woods behind her house. There she swings on vines in imitation of Tarzan and plays contentedly on her own for hours, feeling utterly at home.In this scene, we see that the little girl has discovered that she can best deal with a certain type of recurring physical pain by focusing her entire attention on her breath, as she silently repeats "breathing in, breathing out." Fall 1971, Bryn Mawr, Pennsylvania A group of eight or so teenagers attend their English literature class at an elite college-preparatory school for girls. Our hero, recently arrived, southern accent still quite in evidence, revels in real education; this a delightfully stark contrast to what she got from Kentucky public schools, then forty-ninth in the nation according to some poll or other—only Mississippi's were worse. In this particular class she finds herself defending Presbyterians against what she considers simply inaccurate descriptions of them by James Joyce. At the same time, she is waking up to the realization that she does not believe—and the suspicion that she never really has believed—the Christian doctrines she has been raised on. Indeed, she feels quite foolish for never having properly examined what exactly she had bought into when she participated in all those church activities. She can't recall ever actually believing in "God the Father, Almighty, Maker of Heaven and Earth," much less in "Jesus Christ, His only Son, Our Lord," and all the rest of it. [End Page 39] Spring 1975, Swarthmore, Pennsylvania Having thoroughly rejected religion—for she knows none other than the one she grew up with—our hero pursues study of astronomy, math, language, and music, quite intent on becoming a college professor of some subject or another. Somewhat annoyed that she must take two courses in the curricular area that includes religion, philosophy, anthropology, and sociology, but encouraged by her friends' assertions that religion courses are "not too bad," she signs up for religion and science, figuring that at least half of it will be rational. At the same time, she takes a course on Asian religions. Sometime in the middle of a clear spring night we find her engaged in her part-time job, seated at the eyepiece end of a twenty-meter-long, twenty-four-inch refracting telescope, patiently keeping a star placed just so on the cross-hairs in the siting scope, making fine adjustments to the telescope's precise tracking while the light of stars collects on glass plates coated with very fast photographic emulsion. Between clicks of the shutter she ponders the curiously attractive ideas she is encountering in her religion courses this term. Spring 1983, Evanston, Illinois Our hero earns a Ph.D. in the history and literature of religions, with a focus on Buddhism and Hinduism, and heads for Washington, D.C., to become what she had always aspired to be—a college professor. Summer 1997, Interstate 40 Having experienced a denial of tenure, the challenges of part-time college teaching, training and freelance work in the field of copyediting, life as a wildlife-wielding teacher of auditoria full of elementary school children, an administrative job as second-in-command to a self-described megalomaniac, and the vagaries of teaching two hundred students a term—this lifelong seeker eagerly moves across the country to start a job teaching at an alternative, experiential learning-based... (shrink)

Istarted my nursing career as a pediatric nurse working with children and their families at the Children's Hospital National Medical Center in Washington, DC. My first position was a staff nurse on a busy surgical floor called 4 Blue. To some degree, and as I reflect on that time, one is never truly prepared as a newly minted nurse or physician for the realities of becoming a clinician. So it was for me. I initially worked a rotational schedule of two (...) weeks of days and two weeks of nights where textbook pediatric cases became everyday experiences. Caring for the most complex of childhood illnesses included patients with osteosarcoma, Wilms tumor, neuroblastoma, short gut syndrome, biliary... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Moral Responsibility in a Context of Scarcity:the Journey of a Haitian PhysicianPaul PierreAlmost all Haitian physicians have been involved in some sort of "social movement" at one point in their professional life. In a country characterized by a natural inclination to question authority, fighting the status quo of the ineffective, corrupt and disorganized [End Page 89] Haitian health system often appears to be the right thing to do.In (...) 2002, I played an active role in a large protest movement for better working conditions at the largest health facility in Port-au-Prince: the General Hospital (GH). Port-au-Prince is the capital and economic center of Haiti. It is home to close to a third of Haiti's ten million people. At that time, the situation at the GH facility was dire. All of the 400 beds at the GH were dirty. The staff was underpaid and unhappy. Drug and medical supply stock-outs were routine. Medical equipment was rarely maintained and only one of the six operating theatres in the surgery block was working. Unsupervised physicians in training (like me) were the main health care providers. Attending physicians were busy running their own private clinics, and most of them would come to the hospital solely to "recruit" the less poor patients for their clinics. As physicians-in-training, we had the responsibility of caring for the poor, but we had no means. We grew frustrated and angry witnessing our powerless patients losing legs, arms and their lives for lack of care. On many occasions, I had the parents of my patients buy the gloves that I would use to examine their sick relatives. I've seen patients fighting for the inheritance of medications left by others who had just passed away. There was no way for this hospital to fulfill its mission, and no way for its staff to deliver anything other than mediocre care. We could not accept that situation at such an early stage in our medical development, and so we refused to continue to work. We went on a strike, which completely paralyzed the delivery of care at the hospital for nearly two months. After intense negotiation, the strike ended with a signed agreement with the Minister of Health that addressed, more or less, the reasons of our movement. However, the implementation of the agreement was permanently delayed by other competing "state emergencies" including a general insurrection.At the time of our movement, I thought we were making history. After witnessing 11 "social movements" that similarly paralyzed the GH in the following decade for reasons identical to ours, I am now convinced that we were not. We were temporary actors performing in the cynical play of scarcity on permanent display in Port-au-Prince. The social movement that we started ended up hurting the very same people that we were trying to help.Extending access to heath care to poor people seemed to me at that time to be too complicated and too expensive for an unorganized state like Haiti. I realized that local protests could, at best, influence the allocation of local resources. But so-called local resources are so limited in "resource-limited" countries. Haiti spends only $40 U.S. dollars per capita for health care. This is not enough for good care. The options we were provided were not real ones—since all of them would end in more suffering. The case of providing health care to poor people needed to be approached differently.I was born in Port-au-Prince at the same general hospital in which I would later work. I am the third of four children, and the first male child in my family. My father made me understand very clearly that my first responsibility was for my siblings. My sisters made me understand equally clearly that I had no authority over any of them. I ended up with a lot of responsibility but with very little authority. The few of us who completed school, entered university, studied abroad and "emerged" were considered, to some extent, responsible for the others—the ones who couldn't go to school, university, or abroad, the ones who had "sunk... (shrink)

_The Tender Bud_ is the moving story of one woman's journey through breast cancer. The woman in question happens to be a senior psychiatrist of broad learning and deep clinical insight. Madeleine Meldin weathered the crisis of breast cancer without the support of an immediate family and in the context of ongoing professional burdens. This book is the journal that she wrote for herself as an aid to coping with the personal upheaval of diagnosis, mastectomy, and the aftermath of (...) treatment. It was written while these events unfolded. With arresting candor, Meldin chronicles her emotions at each stage of her odyssey - the recurrent cycles of denial, anxiety, and despair; the conflicting feelings engendered by her physicians, surgeons, and the treatment "establishment" in general; her struggle between resignation and emergent hopefulness. Unique to Meldin's account is her ongoing juxtaposition of the different dimensions of "having cancer." Simply and gracefully, she chronicles the everyday dimension of cancer, with its obligation to proceed maturely and dispassionately with medical and surgical care, to meet one's professional responsibilities, to maintain the appearances that allow one to carry on with one's life. Meldin excels at showing how even the most mundane experiences of everyday life - conversations with friends and colleagues, the selection of clothes, a trip to the hairdresser - became saturated with her illness, with her sense of herself as a cancer patient. (shrink)

_The Tender Bud_ is the moving story of one woman's journey through breast cancer. The woman in question happens to be a senior psychiatrist of broad learning and deep clinical insight. Madeleine Meldin weathered the crisis of breast cancer without the support of an immediate family and in the context of ongoing professional burdens. This book is the journal that she wrote for herself as an aid to coping with the personal upheaval of diagnosis, mastectomy, and the aftermath of (...) treatment. It was written while these events unfolded. With arresting candor, Meldin chronicles her emotions at each stage of her odyssey - the recurrent cycles of denial, anxiety, and despair; the conflicting feelings engendered by her physicians, surgeons, and the treatment "establishment" in general; her struggle between resignation and emergent hopefulness. Unique to Meldin's account is her ongoing juxtaposition of the different dimensions of "having cancer." Simply and gracefully, she chronicles the everyday dimension of cancer, with its obligation to proceed maturely and dispassionately with medical and surgical care, to meet one's professional responsibilities, to maintain the appearances that allow one to carry on with one's life. Meldin excels at showing how even the most mundane experiences of everyday life - conversations with friends and colleagues, the selection of clothes, a trip to the hairdresser - became saturated with her illness, with her sense of herself as a cancer patient. (shrink)

The main aim of this paper is to explore and discuss the interesting juxtaposition of patient involvement within a standardised Enhanced Recovery After Surgery care programme (ERAS). We address our aim by examining the work and strategies of nursing staff caring for patients during postoperative recovery from surgery, exploring how these two potentially competing priorities might effectively co‐exist within a hospital ward. This was a qualitative exploratory study, with data generated through 42 semi‐structured interviews with patients and nurses who (...) had taken part in an ERAS programme in one of three hospital wards in the United Kingdom, adopting a reflexive thematic approach to data analysis. We shine a light on the work undertaken by patients and nurses during the navigation of postoperative recovery, identifying strategies of collaboration and negotiation during this journey. Furthermore, we also identify and consider patients engaged in peer‐peer support during postoperative recovery. This paper adds to the existing literature and current ways of thinking in relation to the quest for standardised, clinically effective care balanced with the aspirations for individualised, patient‐centred care. This paper also helps inform thinking about the use of care pathways in relation to service delivery, considering how best to initiate and deploy best practice aimed at safe and effective postoperative recovery. (shrink)

Doing research on cancer patients often involves painful journeys through the processes of involvement and detachment with research settings and participants. It is a self-transforming event to see close cared for people die. Yet frequently these experiences remain unreported in academic writing. The present article attempts to depict the narratives of attachment in the context of terminal illness and detachment as a consequence of death of the research participant, Jabbar, to reflect on such a journey. It focuses on the (...) formation of a relationship beyond the boundaries of the purposes of research to reflect on two related issues, first, the nature of attachments and relationship building that goes in parallel to the formal dimensions of the research, and second, emotions, self-transformation and contextual embeddedness of doing research with terminally ill cancer patients. (shrink)

Faye Thompson believes there is and draws upon personal narratives from both mothers and midwives to support this belief.

BackgroundEvidence suggests that organizational models that provide care interventions including patient support programs may increase patient adherence to multiple sclerosis therapies by providing tailored symptom management, informational support, psychological and/or social support, lifestyle changes, emotional adjustment, health education, and tailored coaching, thus improving patients' overall quality of life across the disease course.ObjectiveThe main objective of this study was to describe MS patients' self-reported experience of a nurse-led, telephone-based PSP and to explore its potential role in improving disease and (...) therapy management skills.MethodsSurvey data were analyzed from a subset of patients relapsing–remitting MS using interferon beta-1a already registered in the adveva® PSP from three Italian multiple sclerosis centers with a consolidated experience in RRMS disease, treatment management, and PSP programs.ResultsIn total, 244 patient data at baseline were analyzed, of which 115 had a follow-up of at least 6 months. Results from this study provide an early view into the role of this PSP in improving the patients reported overall experience regarding disease management and injectable therapy, thus potentially ameliorating treatment adherence and decreasing health care cost. Moreover, study findings confirm the role of providing a patient-focused support by addressing non-medication-related topics in the PSP consultations. Indeed, patients involved in the adveva® PSP program reported a better psychological status in the follow up as demonstrated by an increased optimism regarding their future, tolerance of disease uncertainty, and their perceived ability to benefit from external help and social support.ConclusionsAs such, it is reasonable to conclude that the involvement in the adveva® PSP and the PSP's assistance in guiding patients on proper treatment self-management techniques is of great value to patients as it might contribute to improving engagement in their health care journey in terms of perceived self-care skills, emotional coping toward the future and the unpredictability of the disease course and their general attitudes toward the injection itself, involving pain tolerance. (shrink)

This paper elucidates the structure of Toni Morrison’s novel, Beloved, using the framework of human emotions in response to grieving and death as developed by Elisabeth Kubler-Ross. Through her studies of terminally ill patients, Kubler-Ross identified five stages when approaching death: denial and isolation, anger, bargaining, depression and acceptance. These stages accurately fill the process that the character Sethe experiences in the novel as she learns to accept her daughter’s death.

This article discusses the role that algorithmic thinking and management play in health care and the kind of exclusions this might create. We argue that evidence‐based medicine relies on research and data to create pathways for patient journeys. Coupled with data‐based algorithmic prediction tools in health care, they establish what could be called health care algorithmics—a mode of management of healthcare that produces forms of algorithmic governmentality. Relying on a critical posthumanist perspective, we show how healthcare algorithmics is contingent (...) on the way authority over bodies is produced and how predictive health care algorithms can reproduce inequalities of the worlds from which they are made, centreing possible futures on existing normativities regulated through algorithmic biopower. In contrast to that, we explore posthuman speculative ethics as a way to challenge understanding of ‘ethics’ and ‘care’ in healthcare algorithmics. We suggest some possible avenues towards working speculative ethics into health care while still being critically attentive to algorithmic modes of management and prediction in health care. (shrink)

Medicine was until recently a greatly respected profession supported by trust and faith on one side and compassion and care on the other. However, over the years, the relationship between doctors and patients has suffered. Doctors now find themselves in the news for all the wrong reasons. Labelled as 'murderers', 'knife happy', 'organ stealing thieves' or touts of pharmaceutical giants, they have now lost respect in the eyes of society. When and how did this happen? When did doctors go from (...) being 'Next to God' to maut ke saudagar, as the media is so fond of labelling them? Hippocratic Oath or Hypocrisy?: Doctors at Crossroads is the author's journey as a doctor over three decades, from a young medical student to an experienced paediatrician. She has used her experience to highlight serious issues--demanding patients, prescribing of unnecessary investigations, hospitals run like business houses, the role of big pharmaceutical industries and so on from the point of view of both doctors and patients. (shrink)

A patient’s rights to informed consent and self-determination in psychiatric treatment are well enshrined, but the same rights have not yet been meaningfully extended to patients with regard to psychiatric diagnosis. Andrew Clark’s essay entitled “Psychiatric Diagnoses and Informed Consent” in The Journal of Clinical Ethics empowers both psychiatrists and patients to rethink who “owns” the process of clinical assessment and of bestowing diagnostic labels that may have far-reaching consequences. Clark’s article represents a noteworthy breakthrough in the field’s ongoing (...) journey toward enhancing informed consent, personal dignity, and patients’ active involvement in their own care. (shrink)

The journey into the world of midwifery or nursing requires the student to attend to the intertwining of self-body-world in order to shift their knowledge of self-body-world into a client/patient-centered context. One of the teaching-learning strategies used to provide safe opportunities is the use of simulations and virtual practices. Rather than learning intimate acts of touching, or life and death decision-making in situations with actual clients/patients, students enter their learning world with rubber torsos, cloth babies, and cyber clinics. (...) The “other” is a simulated other, not a human. How does the student shift from seeing this simulated other as object to a sense of other as subject? In our world of constant use of technology for communication and entertainment, do students shift in and out of a cyber world easily or are they more captured by the simulated experience than with the human world? Has the human world redefined itself where the intertwining of self-body-world blurs the sense of where human body ends and cyber or simulated world begins? What is the place of Bildung when engaged with a cyber other? As a result of educational challenges, including rising enrolments, limited clinical placement opportunities, and increasing risk management concerns, there has been a proliferation in the use of simulation as a teaching strategy. This has left us –the authors– wondering about the student experience of simulation. What do they learn? How do they learn? How can this learning be applied in practice? (shrink)

A patient's experience unfolds through a nurse's personal conversation with herself. Conveyed through three voices, the nurse's dialogue highlights her many internal struggles; those with her conscience on what she understands to be best practice, those important to her as a person, those of an ethical nature that profoundly affect one's search for meaning, and those in the personal–professional realm driven in part by institutional culture. These multivoiced knowledges are confronted in ways that foreground language and understanding as performative (...) acts. At the same time, another journey is co‐constructed with the reader, one that weaves in‐between the symbolic and the real, engaging the imaginary in (inter)play. The nurse's response to the inner conversation with her ‘self/selves’ problematizes practice, illuminates the patient's perspective while highlighting the nurse's sense of her marginal position. Insight into reified and hegemonic assumptions, strategies of how control is maintained through organizational surveillance, trust and moral agency help to foreground personal expectations as the nurse begins to grapple with her own feelings of betrayal. Tackling these insights offers opportunities to rethink oppressive practices in the provision of care. It also enables an alternative appreciation of the everyday dilemmas confronting nurses and offers new meaning to practice. (shrink)

BackgroundThe assessment of patients’ decision-making capacity is ubiquitous in contemporary healthcare. This paper examines the ethics of undisclosed probing of capacity by psychiatrists. The discussion will refer to the law in England and Wales, though the highlighted issues are likely to be relevant in similar jurisdictions.Main textDecision-making capacity is a private attribute, and patients may not necessarily be aware that one of their personal abilities is being explored. Routine exploration of capacity has not historically been a part of psychiatric examination, (...) but it is now difficult to avoid during psychiatric interview.Ethical practice and shared decision-making require patients to be aware that their decision-making may be evaluated by the doctor at some point, and the potential implications of an objective professional conclusion of incapacity. Case law directs that patients should be informed about any assessment of their decision-making ability, though the extent to which this has translated into practice is unclear. However, explanation about the assessment may cause a patient to react negatively, which may impede therapeutic engagement and constitute an ethical dilemma. It is argued that in the absence of systemic measures, professionals should retain the discretion to decide whether a particular patient should be informed about the impending probe into their decision-making ability, or not. In the latter instance, concealment of information about the assessment or its purpose should be subject to the caveats and safeguards associated with any recourse to therapeutic exception.ConclusionThe necessity to mandatorily inform patients about assessment of their capacity introduces a novel ethical dilemma for psychiatrists. The negotiation of this dilemma should not be the prerogative of the clinician, and requires systemic initiatives to ensure universal awareness of patients about the possibility of their capacity being assessed during their journeys through healthcare systems. (shrink)

The referral of a patient for subspecialty consultation and examination is but one facet of the primary care physician's involvement with his patient. Using examples from my practice, I argue that the term “gatekeeper” is an inadequate term for describing what the primary care physician does, or should do, for his patient. “Virgil Role” is offered as an alternative expression based on a proposed parallel between Dante's passage through the Inferno accompanied by his mentor-guide, Virgil, and a (...) sick person's journey through his personal Hell of illness and the labyrinthine medical care system, guided by his physician. (shrink)

As we journey into the fourth year of the COVID-19 pandemic, a majority of Americans express relief at a “return to normal,” experience pandemic fatigue, or embrace the idea of living with COVID-19 in much the same way we live with the seasonal flu. But transition to a new phase of life with SARS-CoV-2 does not diminish the importance of vaccination. The US Centers for Disease Control and the Food and Drug Administration recently recommended another round of booster dose (...) for persons age 5 and up, or an initial series for those not previously vaccinated, with an updated bivalent formula that protects against both the original virus strain and Omicron subvariants that are now the dominant source of infection. By most accounts most of the population has been or will become infected with SARS-CoV-2. Suboptimal uptake of the COVID-19 vaccines among the approximately 25 million adolescents in the United States is a significant obstacle to population coverage, public health, and the health and well-being of adolescents. A major cause of low adolescent uptake is parental vaccine hesitancy. This article discusses parental vaccine hesitancy and argues that permitting independent adolescent consent to COVID-19 vaccination should be an ethical and policy priority as we continue to confront the threat of Omicron and other variants of the coronavirus. We discuss the central role of the pediatric healthcare team in caring for adolescent patients who disagree with their parents about vaccination. (shrink)

A diabetic woman awakens from a coma having forgotten the last ten years of her life. A Haitian immigrant has nightmares that begin bleeding into his waking hours. A retired teacher loses the use of her right hand due to pain of no known origin. Noga Arikha began studying these patients and their confounding symptoms in order to explore how our physical experiences inform our identities. Soon after she initiated her work, the question took on unexpected urgency as Arikha's own (...) mother began to show signs of Alzheimer's disease. In The Ceiling Outside, Arikha recounts this life-changing experience and grapples with the unbreakable links between our bodies and our sense of self. Weaving together stories of her subjects' troubles and her mother's decline, Arikha searches for some meaning in the science she has set out to study. The result is an unforgettable journey across the ever-shifting boundaries between ourselves and each other."--. (shrink)

When celebrated neuropsychologist Paul Broks's wife died of cancer, it sparked a journey of grief and reflection that traced a lifelong attempt to understand how the brain gives rise to the soul. The result of that journey is a gorgeous, evocative meditation on fate, death, consciousness, and what it means to be human. The Darker the Night, The Brighter the Stars weaves a scientist's understanding of the mind - its logic, its nuance, how we think about what makes (...) a person - with a poet's approach to humanity, that crucial and ever-elusive why. It's a story that unfolds through the centuries, along the path of humankind's constant quest to discover what makes us human, and the answers that consistently slip out of our grasp. It's modern medicine and psychology and ancient tales; history and myth combined; fiction and the stranger truth. But, most importantly, it's Broks' story, grounded in his own most fascinating cases as a clinician--patients with brain injuries that revealed something fundamental about the link between the raw stuff of our bodies and brains and the ineffable selves we take for who we are.Tracing a loose arc of loss, acceptance, and renewal, he unfolds striking, imaginative stories of everything from Schopenhauer to the Greek philosophers to jazz guitarist Pat Martino in order to sketch a multifaceted view of humanness that is as heartbreaking at it is affirming. (shrink)

An investigation of some of the most contentious debates of our time, Galileo's Middle Finger describes Alice Dreger's experiences on the front lines of scientific controversy, where for two decades she has worked as an advocate for victims of unethical research while also defending the right of scientists to pursue challenging research into human identities. Dreger's own attempts to reconcile academic freedom with the pursuit of justice grew out of her research into the treatment of people born intersex (formerly called (...) hermaphrodites). The shocking history of surgical mutilation and ethical abuses conducted in the name of "normalizing" intersex children moved her to become a patient rights' activist. By bringing evidence to physicians and the public, she helped change the medical system. But even as she worked to correct these injustices, Dreger began to witness how some fellow liberal activists, motivated by identity politics, were employing lies and personal attacks to silence scientists whose data revealed inconvenient truths. Troubled, she traveled around the country digging up sources and interviewing the targets of these politically motivated campaigns. Among the subjects she covers in the book are the anthropologist Napoleon Chagnon, falsely accused in a bestselling book of committing genocide against a South American tribe; the psychologist Michael Bailey, accused of abusing transgender women; and the evolutionary biologist E. O. Wilson, accused of fomenting rightwing ideas about human nature. Galileo's Middle Finger describes Dreger's long and harrowing journey back and forth between the two camps for which she felt equal empathy: social justice warriors and researchers determined to put truth before politics. (shrink)

An ICU and Palliative Care specialist featured in the Netflix documentary Extremis offers a framework for a better way to exit life that will change our medical culture at the deepest level In medical school, no one teaches you how to let a patient die. Jessica Zitter became a doctor because she wanted to be a hero. She elected to specialize in critical care--to become an ICU physician--and imagined herself swooping in to rescue patients from the brink of death. (...) But then during her first code she found herself cracking the ribs of a patient so old and frail it was unimaginable he would ever come back to life. She began to question her choice. Extreme Measures charts Zitter's journey from wanting to be one kind of hero to becoming another--a doctor who prioritizes the patient's values and preferences in an environment where the default choice is the extreme use of technology. In our current medical culture, the old and the ill are put on what she terms the End-of-Life Conveyor belt. They are intubated, catheterized, and even shelved away in care facilities to suffer their final days alone, confused, and often in pain. In her work Zitter has learned what patients fear more than death itself : the prospect of dying badly. She builds bridges between patients and caregivers, formulates plans to allay patients' pain and anxiety, and enlists the support of loved ones so that life can end well, even beautifully. Filled with rich patient stories that make a compelling medical narrative, Extreme Measures enlarges the national conversation as it thoughtfully and compassionately examines an experience that defines being human. (shrink)