Recognizing that GLBTI individuals are often barred from visiting their partners in hospitals or from acting as health care surrogates for incapacitated partners, President Obama directed the Department of Health and Human Services to address these issues. In response, the department amended its rules to prohibit hospitals from restricting, limiting, or denying visitation privileges on the basis of gender identity or sexual orientation. But the changes do not affect the designation of a health care surrogate, a matter largely governed (...) by state law. Therefore, subject to state law, same-sex partners can still be legally barred from making health care decisions for their incapacitated partners, and it remains essential that they execute advance directives and appoint one another as their health care proxies. (shrink)

The purpose of this article is to respond to Jacques Derrida’s reading of Immanuel Kant’s laws of hospitality and to offer a deeper exploration into Kant’s separation of a cosmopolitan right to visit ( Besuchsrecht) and the idea of a universal right to reside ( Gastrecht). Through this discussion, the various laws of hospitality will be examined, extrapolated and outlined, particularly in response to the tensions articulated by Derrida. By doing so, this article will offer a reinterpretation of the laws (...) of hospitality, arguing that hospitality is not meant to capture all the conditions necessary for cosmopolitan citizenship or for a thoroughgoing condition of cosmopolitan justice as Derrida assumes. This is because hospitality could be understood as the basic normative requirement necessary to establish an ethical condition for intersubjective communication at the global level, where discursive communication regarding the substance of a future condition of cosmopolitan justice is to be subjected to global public reason. (shrink)

The Republic of the Ukraine has a huge prison population and a large prison health care system. Like all other public services in that country it is lacking in sufficient funds to operate adequately and with due respect to the human rights of the prisoners and its health care employees. This report and observations are based on my knowledge of the Ukrainian health care system and a visit to a Ukrainian prison hospital. It includes some ethical reflections stemming (...) from this experience. Although problem-solving exercises can often help to point to areas of potential intervention that could ameliorate a troublesome situation, in this case prison health care conditions cannot be substituted for economic growth, political stability or increased awareness of societal moral obligations. (shrink)

In this commentary on a clinical ethics case pertaining to a same-sex couple that does not have explicit surrogate decision-making or hospital-visitation rights (in the face of objections from the family-of-origin of one of the queer partners), the authors invoke contemporary legal and policy standards on LGBTQ health care in the United States and abroad. Given this historical moment in which some clinical rights are guaranteed for LGBTQ families whilst others are in transition, the authors advocate (...) for the implementation of clinical ethics mediation as the soundest and most humane form of resolution in matters where there is a dispute between family members about an incapacitated loved one. They argue that clinical ethics mediation is an ideal alternative solution because it works toward consensus about outcome, even where consensus about values is not achievable. (shrink)

Background: Patients’ rights arise from their expectations of the healthcare system, which are rooted in their needs. Visitation is seen as a necessary need for patients and families in intensive care units. Objectives: The authors attempted to design, implement, and evaluate a new visiting policy in the intensive care units. Research design: This study was an action research, including two qualitative and quantitative approaches. Participants and research context: The viewpoints of 51 participants (patients, families, doctors, nurses, and guards) (...) on how to change the limited visiting policy were explained through semi-structured interviews and focus groups. The new visiting policy (contractual visitation) was designed, implemented, and evaluated with the involvement of participants. Ethical considerations: The hospital ethics committee approval was gained and the informed consent was obtained from all the participants. Findings: The content of interviews was analyzed and classified into four categories: advantages and disadvantages of visiting policies, and barriers and facilitators of changing the limited visiting policy. After implementation of the new policy (contractual visitation), a significant difference observed in satisfaction status before and after the changes (p value < 0.001). Discussion: Nowadays, many countries’ clinical guidelines recommend flexible visiting policy, which is consistent with the results of this study. Conclusion: Changing the limited visiting policy was a necessary need for patients and families that established with the involvement of them and staff. (shrink)

Kant limits cosmopolitan right to a universal right of hospitality, condemning European imperial practices towards indigenous peoples, while allowing a right to visit foreign countries for the purpose of offering to engage in commerce. I argue that attempts by contemporary theorists such as Jeremy Waldron to expand and update Kant’s juridical category of cosmopolitan right would blunt or erase Kant’s own anti-colonial doctrine. Waldron’s use of Kant’s category of cosmopolitan right to criticize contemporary identity politics relies on premises that upset (...) Kant’s balanced right to hospitality. An over-extensive right to visit can invoke “Kantian” principles that Kant himself could not have consistently held, without weakening his condemnation of European settlement. I construct an alternative spirit of cosmopolitan right more favorable to the contemporary claims of indigenous peoples. Kant’s analysis suggests there are circumstances when indigenous peoples may choose whether to engage in extensive cultural interaction, and reasonably refuse the risks of subjecting their claims to debate in democratic politics in a unitary public. Cosmopolitan right accorded respect to peoples; any “domestic” adaptation of cosmopolitan right should respect indigenous peoples as peoples, absent a serious public explanation by a democratic state for why it has now become appropriate to treat indigenous peoples merely as individual citizens. (shrink)

This article aims to highlight the theoretical and philosophical debate on hospitality underlining the normative elements of framing migrants and refugees as individual agents in the light of hospitality theory and migration governance. It argued the critiques of the neo-Kantian hospitality approach and the EU welcome culture with regard to refugees in the EU from a philosophical perspective. The “No human being is illegal” motto is proposed to be conceived as a principle of the EU Charter of Fundamental Rights. (...) The cosmopolitan right to visit and the universal right to reside were discussed in the context of human rights and co-responsibility. Linking the hospitality approach with migration governance enables the reconstruction of reception policies and practices, diversification of non-state actors that engage in migration governance mechanism, and polarization of political initiatives (e.g., politics of allocation and dispersal, readmission negotiations, convergence/divergence of priorities and strategic interests). The research findings highlight that the EU adopted a neo-Kantian hospitality approach that combines both “co-responsibility” and “vertical/heterarchical relations.” The EU’s “New Pact on Migration and Asylum” was considered proof of how the EU follows neo-Kantian hospitality that is manifested in dualism and contradictory approach. The study presents a typology that splits co-responsibility into individual/institutional actions and human rights/migration governance. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Right HeartIngrid GouldI remarked to a friend, “We haven’t spoken since my arrest!” Alarm and confusion clouded his face, given my half-century of squeaky-clean living. “Cardiac arrest,” I clarified. “The fire department rebooted me.”An electrophysiologist diagnosed Arrhythmogenic Right Ventricular Dysplasia, prescribed medication, and implanted a defibrillator. For the next three-and-a-half years, he helped me live with a disease I didn’t know existed until he told me I had (...) it.The disease progressed—an ironic, disease-centric term since its advancement was to my detriment— prompting my cardiologist to recommend seeing someone who specialized in heart failure. I resisted the very idea of heart failure, a terrible term for a struggling organ, but took her advice and scheduled an appointment.The new cardiologist urged transplant testing, a lengthy process. I agreed, figuring that by the time I needed a new heart in 15–20 years, they’d be rolling off 3D printers.To record occasional transplant musings and inchoate fears and perhaps, over time, untangle them, I began journaling. I chronicled my passage through the echocardiogram, heart catheterization, 31 tubes of bloodwork, interviews with different clinical specialties, a pulmonary function test in a machine reminiscent of Star Trek’s Transporter, and more. Testing had barely begun when my medication stopped working—a Halloween shock.I began a harsher medication, underwent an ablation, and spent six weeks in a wearable defibrillator, a vest with abundant wires, and a purse-sized battery pack that made me resemble a character in [End Page 123] the Jetsons. This attire did not bring holiday comfort or joy to the TSA1 when I flew to visit my sister. As my R-waves faded to a whisper, I swapped the vest for a second implanted defibrillator, substantially more sensitive than the first.In early 2018, we learned I had qualified for transplant listing, though I wished to get as much mileage as possible from the original engine. My cardiologist warned, “There is no Plan B—no machine, device, or medication for the long-term. You will need a transplant.” He explained that since most cardiac patients have left-heart problems, companies develop products for the left side of the heart. My problem was on the right—a tiny market. He also cautioned that a patient needs to be sick enough to warrant transplant and well enough to remain a candidate, survive the surgery, and recover.Although clinically I was ready, I was not personally ready. I felt too good to trade an excellent quality of life for the promised miserable post-transplant year. The cardiologist wisely asked if I wanted to speak with another patient. When I requested someone beyond the dreaded first year, he put me in touch with two women who had received new hearts a few years earlier and befriended each other. They soon became my invaluable mentors and cherished friends. I will never forget seeing them stride into our first meeting and thinking, “They are beautiful! They look totally normal!”By May, climbing four flights of stairs took as much effort as five used to take. Tests confirmed further deterioration and suggested I had 7–13 months of declining health before my heart would give out completely. We chose a date for hospital admission, and I started telling people outside my immediate family. Most were flabbergasted, believing heart transplants were the last hope of the desperately ill. I did not look moribund, though, apparently, I was.The eight months after my first transplant appointment let me prepare psychologically to bid farewell to my heart—the metaphor for kindness, love, and bravery in our culture—and to welcome a new organ from a generous person less medically fortunate than I.In the hospital, I met others awaiting their hearts. A sudden intimacy arises when mortal choices catapult people into a medical realm suggestive of science fiction. Add the emotional intensity that accompanies knowing your extended life comes courtesy of a person who breathes no more on this earth and you wonder how an organ recipient integrates sorrow and gratitude.Two weeks after I was hospitalized, my cardiologist informed me the wait was over... (shrink)

You recognize when you know something for certain, right? You "know" the sky is blue, or that the traffic light had turned green, or where you were on the morning of September 11, 2001--you know these things, well, because you just do. In On Being Certain , neurologist Robert Burton challenges the notions of how we think about what we know. He shows that the feeling of certainty we have when we "know" something comes from sources beyond our control and (...) knowledge. In fact, certainty is a mental sensation, rather than evidence of fact. Because this "feeling of knowing" seems like confirmation of knowledge, we tend to think of it as a product of reason. But an increasing body of evidence suggests that feelings such as certainty stem from primitive areas of the brain, and are independent of active, conscious reflection and reasoning. The feeling of knowing happens to us; we cannot make it happen. Bringing together cutting edge neuroscience, experimental data, and fascinating anecdotes, Robert Burton explores the inconsistent and sometimes paradoxical relationship between our thoughts and what we actually know. Provocative and groundbreaking, On Being Certain , will challenge what you know (or think you know) about the mind, knowledge, and reason. ROBERT BURTON, M.D. graduated from Yale University and University of California at San Francisco medical school, where he also completed his neurology residency. At age 33, he was appointed chief of the Division of Neurology at Mt. Zion-UCSF Hospital, where he subsequently became Associate Chief of the Department of Neurosciences. His non-neurology writing career includes three critically acclaimed novels. He lives in Sausalito, California. Visit his website at http://www.rburton.com/ “What do we do when we recognize that a false certainty feels the same as certainty about the sky being blue? A lesser guide might get bogged down in nail-biting doubts about the limits of knowledge. Yet Burton not only makes clear the fascinating beauty of this tangled terrain, he also brings us out the other side with a clearer sense of how to navigate. It's a lovely piece of work; I'm all but certain you'll like it. “ --David Dobbs, author of Reef Madness; Charles Darwin, Alexander Agassiz, and the Meaning of Coral “Burton has a great talent for combining wit and insight in a way both palatable and profound.” --Johanna Shapiro PhD, professor of Family Medicine at UC Irvine School of Medicine “A new way of looking at knowledge that merits close reading by scientists and general readers alike.” -- Kirkus “This could be one of the most important books of the year. With so much riding on ‘certainty,’ and so little known about how people actually reach a state of certainty about anything, some plain speaking from a knowledgeable neuroscientist is called for. If Gladwell's Blink was fascinating but largely anecdotal, Burton's book drills down to the real science behind snap judgments and other decision-making.” -- Howard Rheingold, futurist and author of Smart Mobs “A fascinating read. Burton’s engaging prose takes us into the deepest corners of our subconscious, making us question our most solid contentions. Nobody who reads this book will walk away from it and say ‘I know this for sure’ ever again.” --Sylvia Pagán Westphal, science reporter, The Wall Street Journal “Burton provides a compelling and though-provoking case that we should be more skeptical about our beliefs. Along the way, he also provides a novel perspective on many lines of research that should be of interest to readers who are looking for a broad introduction to the cognitive sciences.” -- Seed Magazine. (shrink)

Background: For patients admitted to hospital both pastoral care and privacy or confidentiality are important. Rules related to each have come into conflict recently in the US. Federal laws and other rules protect confidentiality in ways that countermand hospitals’ methods for facilitating access to pastoral care. This leads to conflicts and poses an unusual type of dilemma—one of conflicting values and rights. As interests are elements necessary for establishing rights, it is important to explore patients’ interests in (...) privacy compared with their desire for attention from a cleric.Aim: To assess the willingness of patients to have their names and rooms included on a list by religion, having that information given to clergy without their consent, their sense of privacy violation if that were done and their views about patients’ privacy rights.Methods and participants: 179 patients, aged 18–92 years, admitted to hospital in an acute care setting, were interviewed and asked about their preferences for confidentiality and pastoral support.Results: Most patients did not want to be listed by religion; 58% did not think hospitals should give lists to clergy without their consent and 84% welcomed a visit by their own clergy even if triggered from a hospital list.Conclusions: Values related to confidentiality or privacy and pastoral care were found to be inconsistent and more complicated than expected. Balancing the right to privacy and the value of religious support continue to present a challenge for hospitals. Patients’ preferences support the importance of providing balance in a way that protects rights while offering comprehensive services. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Right Thing to DoJane RogersIn stark contrast to getting my graduate degree in bioethics in which I discovered that I am inclined to favor an ethics based on my religious beliefs, in nursing school I learned that I had to take my religion out of nursing care. As a bioethics student, I read in my textbook, Bioethics: A Systematic Approach, that “… just because an action is rationally (...) allowed does not mean that everyone agrees one ought to act in that way.” Yet often in nursing I found that we nurses knew what was best for our patients, even if they did not. At least, we believed that we did. This general paternalistic belief spread into every area of the care we gave except for one, and that was religion. [End Page 208]As student nurses, we learned to separate our religion from our care to focus on the patient’s religion or spiritual needs. Our patients should never know of our religious beliefs or even if we had a lack of them. We needed to be completely neutral on all religious issues and focus solely on the patient’s preference. If our patients needed spiritual care, we would find someone to provide it and we would incorporate it into the nursing plan of care. Providing care of the whole patient including their religious needs was the definition of a good nurse. Certainly I wanted to be a good nurse, so I swore I would always include the spiritual needs of my patients as part of my care, while never expressing my own.As fate would have it, as a new nurse I found myself overwhelmed running around just trying to give medications, admit and discharge patients, start IV’s, insert catheters, note doctor’s orders and get my charting done. My time was engaged in trying to calm confused and combative patients, running to grab an emesis basin for a patient to throw up in or answering the phone, so thinking about religion or spiritual care for my patients most of the time amounted to “God help me and my patients get through this shift.” My goal of being a good nurse was starting to look dismal as I realized I had no idea if I could find the time or means and ways to incorporate religion into the care I gave, or if it even mattered if I did.Fortuitously for me, most of my patients never mentioned religion, although at times they did leave some nonverbal clues. I could see a rosary laying on a bedside table or a bible or prayer book next to them in bed. While I would make sure their religious item was always within reach, I remained respectful yet distant in religious matters, never offering any spiritual care or assistance. I was quite accepting of my first Mormon patient wearing the garment under the traditional hospital gown. I was appalled when an unconscious Jehovah Witness patient was nearly given blood. When a minister or priest came to visit, I’d excuse myself quickly so that the work of their God could do what I could not or should not do. Occasionally I was asked by family members to call in a minister or a priest or chaplain and I did that with a great feeling of satisfaction as I was surely providing the spiritual care they requested.Eventually however I did start to indulge in highly spontaneous and random acts of religion. These were always done secretly. The patient or family must never know. Thinking it would help I once covertly gave a patient a special rosary I had with Lourdes water in it thinking it might heal him. I waited to see a miracle. It never came. Despite the absence of that miracle I was still hopeful that perhaps my prayers or another rosary could heal or at least help some of my patients. After all, as a nurse I witnessed lots of healings that astounded me. People I never thought would get better sometimes did anyway.Although I was cognizant that some healing was the direct result of superb medical intervention and excellent nursing care, there were always... (shrink)

Objectives During the COVID-19 pandemic, healthcare resources including staff were diverted from paediatric services to support COVID-positive adult patients. Hospital visiting restrictions and reductions in face-to-face paediatric care were also enforced. We investigated the impact of service changes during the first wave of the pandemic on children and young people (CYP), to inform recommendations for maintaining their care during future pandemics. Design A multi-centre service evaluation was performed through a survey of consultant paediatricians working within the North Thames Paediatric (...) Network, a group of paediatric services in London. We investigated six areas: redeployment, visiting restrictions, patient safety, vulnerable children, virtual care and ethical issues. Results Survey responses were received from 47 paediatricians across six National Health Service Trusts. Children's right to health was largely believed to be compromised by the prioritisation of adults during the pandemic (81%; n = 33). Sub-optimal paediatric care due to redeployment (61%; n = 28) and the impact of visiting restrictions on CYP's mental health (79%; n = 37) were reported. Decreased hospital attendances of CYP were associated with parental fear of COVID-19 infection-risks (96%; n = 45) and government ‘stay at home’ advice (89%; n = 42). Reductions in face-to-face care were noted to have disadvantaged those with complex needs, disabilities and safeguarding concerns. Conclusion Consultant paediatricians perceived that paediatric care was compromised during the first wave of the pandemic, resulting in harm to children. This harm must be minimised in subsequent pandemics. Recommendations for future practice which were developed from our findings are provided, including maintaining face-to-face care for vulnerable children. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Joint and Grief AchesHeer HendrySomething that surprised me when I started my clinical rotations in medical school was how often we discussed proper footwear. In the lulls of rounds, I've heard healthcare providers talk about how worn-down shoes or inadequate arch support have caused them joint and back pains. We spend hours on our feet and bring the aches home with us, a reminder of our workday as we (...) walk our dogs or grocery shop. Embarrassingly, this is what was on my mind as I was starting a 12-hour shift wearing a new pair of shoes that an ICU nurse had recommended.It was the third day of my emergency medicine rotation, and my team received descriptions and plans for the 23 patients in the department precisely at 0700. I scribbled notes about each patient on my notepad, learning to distinguish which aspects of each patient were important to carry into this next shift for good continuity of care. For one patient, my note read: "aspiration, sepsis, hospice."My resident and I walked into each room and introduced ourselves, confirmed their story, and updated them on the next steps that we would be working on. The 4th patient on our list was the one I noted above—an 87-year-old male who was brought in after repeated bouts of emesis (vomiting) and choking. This was his fifth hospital visit this year for similar chief complaints, two of which resulted in ICU stays. Hours earlier, his two sons and two daughters had made the decision to place him on hospice.Upon entering the room, I saw an elderly patient lying on a stretcher with his eyes closed, grimacing and breathing rapidly. There was a younger man at his bedside staring at the patient while drumming his fingers on a coffee cup from a gas station next to the hospital. He didn't notice us walk in and was startled as we began to introduce ourselves. He identified himself as the patient's son, telling us he had just arrived at the hospital but had been on a conference call with his other siblings and palliative care earlier. His eyes darted between us and his father's rapid, shallow breaths.We updated him on his father's condition, explaining that we'd been making him comfortable with morphine and benzodiazepines. We talked about his blood lactic acid, his electrolytes, and his feeding tube. He continued drumming his fingers on the cup and nodding as we discussed trying to find an inpatient bed for his father. We informed him about the unpredictability of how much longer he would be alive and the unlikelihood of discharge. We asked if we could answer any questions for him, and he shook his head, but as we opened the door to leave, he asked: "So, the morphine is shutting down his body, right?" We clarified the purpose of the morphine, explaining that the morphine was making him comfortable and pain-free, but that his body was shutting down on its own."But in a way I'm still killing him?" he asked. My chest squeezed tight at that question. My goal for this patient immediately changed from getting him a bed in the inpatient unit to convincing his son that he was not harming his father. We started from the beginning and explained the lab markers and prognosis once again and asked if he'd like to speak to palliative care in person. He simply nodded as we exited to give him privacy.Leaving that room, it was barely 7:00 am. We still had 19 other patients to check on. My chest was still tight, but I could not allow my mind to remain in that room while the other patients were still pending exams, workups, and admissions. I acknowledged to myself that reflection would have to occur later, and yet, as we walked to the next [End Page e16] room, I wondered if the resident I was with had lost anyone in his life as I have in mine. Seeing the son trying to process and understand the situation in real time triggered my memories of past times... (shrink)

In this late story, Truman Capote celebrates a peculiar form of object relations to expand definitions of sexuality beyond conventional identity categories and thus suggest a more expansive model of social inclusion and civil rights. Building on work in animal studies, queer theory, and the new materialities, I argue that the literalism of these object relations decenters the human and reimagines a wider ethics of belonging. The story describes an elderly widow who keeps all of her deceased cats in (...) a freezer because she cannot bear to be parted from them. Although the story prepares us to expect that the frozen cats could be symbols or surrogates for her dead husband, it becomes clear that she loves her cats literally as cats and nothing more. Capote pushes us to acknowledge and accept this love for her cats just as it is. And by doing so, he invites us to imagine a more hospitable world in which we accommodate other kinds of object-choice beyond the confines of heterosexual marriage, including but certainly not limited to his own homosexuality. (shrink)

On April 3, 1995, the Fourth Circuit upheld the right of a Maryland hospital to terminate a surgeon who was HIV-positive ). A resident in the University of Maryland Neurosurgical Training Program was dismissed when hospital administrators learned of his infection with HIV. The resident, known as Dr. Doe, claimed that his termination violated federal laws protecting persons with disabilities. The court upheld the hospital's actions as lawful and affirmed the trial court's grant of summary judgment for (...) the hospital.Dr. Doe charged that his dismissal from the training program violated the Rehabilitation Act and the Americans with Disabilities Act. (shrink)

This is the first in-depth study of a female audience that shows how and why women went to the theater in Restoration England. Robert challenges the assumption that a "ladies' faction" played an important part in encouraging the playhouses to present a more moral, less bawdy or "satirical" style of comedy, thus changing the course of English drama. He shows that there is no evidence of this faction, and that "sentimental" comedies really did cater to the interest of their female (...) audience by incorporating the fashionable concern for women's rights. Drawing on many sources, including the life of Elizabeth Pepys, the book investigates just who these "ladies" were, what determined their theater-going, how often they went, what they liked and did in the theater, and the role of patronage at the court of three Restoration queens. (shrink)

Background: Nurses have always been known as an advocate for the rights of patients. The recognition of what is perceived as the violation of patients’ rights can help nurses to understand patients’ concerns and priorities. Thus, it helps nurses play their supportive roles more effectively. Objective: The aim of this study was to explore different dimensions of the violation of patients’ rights. Research design: Data were collected utilizing unstructured interviews and field notes. Data analysis was conducted using (...) the qualitative content analysis approach. Prolonged engagement, maximum variation sampling, and member check were among the factors which enriched the research. Participants and research context: The sample consisted of 18 patients and 11 members of their families. They were purposively selected from two hospitals in Tehran during 2009–2012. Ethical considerations: The research was approved by the Ethics Committee of the university and hospitals. Finding: The patients’ rights were violated in a variety of ways. There were three main dimensions to this issue: (a) care recession including deprivation of the caregiver’s presence and the delay/lack of needed responses; (b) receiving mechanical care including superficiality, lack of emotion, and failure to understand the situation; and (c) being disrespected including humility and aggression. Conclusion: The patients and their families consider any shortcomings in relation to the patient and the quality of care as the violation of the rights. The findings of the study imply sensitizing managers toward providing appropriate conditions as well as educating nurses to observe patients’ rights. It is suggested that the processes leading to the violation of patients’ rights be discovered and prevented in the future. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Towards Language Justice:A Call to Identify and Overcome Structural BarriersFelicity RatwayThe patient I am interpreting for praises my interpretation. I've done nothing particularly noteworthy to merit her praise; I followed basic ethical tenets, nothing more. Hearing everything the provider says rather than a brief synopsis exceeds her expectations after many experiences working with untrained interpreters, or being refused interpreting services altogether. The bar shouldn't be this low.I am exhausted. (...) Like most interpreters, I am an independent contractor. I must work 5 am–9 pm to get paid for 8 hours of work. With some language companies, I earn less than minimum wage. To many new interpreters, $35 per hour sounds great—then they realize that driving to and from a one-hour appointment involves two hours of unpaid drive time. In rural areas, this really takes a toll. I spend hours checking pay stubs; I find errors nearly every pay period, but I wouldn't have a court case for the repeated underpayments because when I reach out to ask for the errors to be fixed, they are eventually corrected. Despite my state and national certifications and Master's degree in Interpreting and Translation Studies, medical interpreting doesn't pay the bills. I supplement my income through multiple other jobs.Laws intended to protect the patients we work with as interpreters are seldom enforced. Title VI Guidance defines a competent interpreter as one who has been trained, demonstrated proficiency, demonstrated interpreting skills, and agrees to abide by ethical standards. Patients fare better when competent interpreters are available, but when most patient and provider experiences are with interpreters who haven't met competency standards, patients and providers (understandably) lose trust in the profession. The profession has few opportunities for advancement and struggles to attract interpreters to go through rigorous training or build a long-term career. Skilled interpreters soon leave for greener pastures: the Oregon Health Authority (OHA) houses a registry of interpreters who meet minimum state training and proficiency requirements, and a 2019–2021 study found that roughly 92% of interpreters due to renew dropped off of the registry instead.When I began interpreting, I was shocked by how infrequently laws protecting patients' rights to interpreting services were followed in practice. At primary care appointments, patients often cannot answer questions about specialist visits because interpretation was not provided at the specialist's office. I knew recipients of federal funds couldn't [End Page 164] legally bill patients for interpreting services, yet I was asked to sight-translate paperwork that stated patients would be billed for interpreting services if they were late to an appointment. I reported the issue; years later, the same paperwork would still appear on their public-facing website. I discovered that though state law required credentialed interpreters to be made available, no agency had been tasked with enforcing that law; all that could be done with my complaint was to refer it to the patient's insurance company.In Oregon, Coordinated Care Organizations (CCOs) manage Medicaid plans, and are required to pay for interpreting services for their members. Instead of hiring interpreters directly, many contract with language companies that, in turn, hire us. Providers must book interpreters through the specific language companies contracted with the patient's CCO to avoid paying for the interpreter themselves. I am often called to interpret for speakers of indigenous languages even though I am not able to meet their needs as a Spanish interpreter. I offer contact information for organizations that could provide interpretation in the appropriate language, but the receptionist tells me that she can only go through specific vendors because the clinic doesn't want to have to pay out-of-pocket. Indigenous-led organizations that pay indigenous interpreters a living wage are not contracted with the CCOs in my region. In some cases, when interpreters are not available for a particular language through the CCO's preferred vendor, providers instead ask that an appointment be rescheduled, hoping that an interpreter will be available later. I have seen speakers of rare languages seeking primary care end up in the hospital after being rescheduled several times.Providers I work with often don't know... (shrink)

In late March of 2020, a new hashtag, #FilmYourHospital, made its first appearance on social media. The hashtag encouraged people to visit local hospitals to take pictures and videos of empty hospitals to help “prove” that the COVID-19 pandemic is an elaborate hoax. Using techniques from Social Network Analysis, this case study examines how this conspiracy theory propagated on Twitter and whether the hashtag virality was aided by the use of automation or coordination among Twitter users. We found that while (...) much of the content came from users with limited reach, the oxygen that fueled this conspiracy in its early days came from a handful of prominent conservative politicians and far right political activists on Twitter. These power users used this hashtag to build awareness about the campaign and to encourage their followers to break quarantine and film what is happening at their local hospitals. After the initial boost by a few prominent accounts, the campaign was mostly sustained by pro-Trump accounts, followed by a secondary wave of propagation outside the U.S. The rise of the #FilmYourHospital conspiracy from a single tweet demonstrates the ongoing challenge of addressing false, viral information during the COVID-19 pandemic. While the spread of misinformation can be potentially mitigated by fact-checking and directing people to credible sources of information from public health agencies, false and misleading claims that are driven by politics and supported by strong convictions and not science are much harder to root out. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:From Parnassus to EdenChristopher McDonoughFor Rebekah SmithIn these pages some seven years ago, Robert Renehan (1992) discussed the passage from book 19 of the Odyssey in which the young Odysseus’ cousins sing a healing incantation over his wound in the wilderness of Mount Parnassus. 1 Renehan was specifically interested in bringing to light the Old Irish comparanda, so as to display the Indo-European roots of this particular form of (...) magical healing; he was clear in stating, nonetheless, that such practices are found in many other parts of the world. To encounter this custom, however, it is not necessary to study ancient Ireland or Greece, as I discovered by surprise in class one day.When lecturing on the Odyssey in the past, I have always enjoyed lingering over this particular scene, presenting to students Erich Auerbach’s ideas on mimesis as well as more general folkloric material. 2 In addition to the Irish evidence adduced by Renehan, I have usually mentioned anecdotes about the brauchers (wizards) of the Pennsylvania Dutch, some of whom could still blood by chanting—even over the telephone (see Dorson 1964, 115). Thus it was, in the fall of 1995, that I was giving a guest lecture on book 19 for a classical mythology class at the University of North Carolina at Greensboro. I had just finished reciting some of the stories above, when a student raised his hand to ask, “Is that anything like talking out fire?” Before I could respond, another student also spoke up. “I was thinking that, too,” she said.A few others were nodding their heads in recognition, though the majority of the class looked perplexed. I certainly was, since I had no idea what they were talking about. The first student explained that he [End Page 297] was from Eden, North Carolina, a Piedmont town near the Virginia border; that, in this area, there were old women who could talk out fire; that, if a person had been burned, such a woman could be hired to speak to the fire and convince it to leave the body; that his own grandmother was such a woman; and that he himself as a child had had a burn talked out of his hand, which hand—the very hand he had raised!—he now raised again as dramatic testimony of the treatment. A few other students said that they too were familiar with the custom, though none had quite so intimate a familiarity as he.In the days that followed I did a little research on the topic, fearing that I may have been hoodwinked by some true son of crafty Autolykos. But his story checked out: the phenomenon of “talking the fire out of a burn” is well attested in North Carolina and throughout the South. 3 While folklorists have collected many accounts of this type of healing, perhaps the most vivid description is given by Southern writer Harry Crews. In A Childhood: The Biography of a Place (1978 = 1993, 17–170), a memoir of his upbringing in Depression-era rural Georgia, the author relates that, while playing as a boy, he had fallen into a cast-iron tub filled with boiling water for skinning hogs; over two-thirds of his body was scalded and, he recalls, the skin of his left hand came off “like a wet glove.” His family was too remote and too poor for a hospital trip, and had to rely on some makeshift arrangements set up by the local doctor. Shortly thereafter, however, they were visited by a rough character named Hollis Toomey, known throughout the area for his ability to talk out fire. Crews recounts what happened next:Hollis Toomey’s voice was low like the quiet rasping of a file on metal. I couldn’t hear most of what he had to say, but that was all right because I stopped burning before he ever started talking. He talked to the fire like an old and respected adversary, but one he had beaten consistently and had come to beat again. I don’t remember him once looking at my face while he explained: “Fire, this boy is mine. This bed is mine... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:My Gratifying Testimonial of My Extended Warranties of LifeDanette RaginMy name is Danette Ragin. I am a 2-time kidney recipient who has been diagnosed with ESRD (End Stage Renal Disease). Both transplants were performed in Baltimore, Maryland. I am also a 3-time Donor Family Member and the proud Mom of a living donor.I received the first kidney from a deceased donor on June 22, 2008. The donor was traveling (...) thru Maryland with her family on vacation and experienced heart complications. My second kidney was donated to me by my youngest daughter Angel on December 20. 2016. I am thankful to God for both of my extended warranties. I’d like to share a little about my journey with you.Around the year 2002, I started seeing my PCP (Primary Care Physician) for terrible migraine headaches, which on occasions lasted for weeks. After several tests, she expressed her concerns. I had been spilling protein in my urine and my kidney function was showing some abnormalities. My PCP sent me to see a neurologist after several failed attempts to gain some type of reprieve from the nerve-racking headaches. My nephrologist confirmed my PCP’s diagnosis, and I had visits with the nephrologist every 6 months until they noticed a substantial change.“Ah, Mrs. Ragin, you’re in the beginning stage of End Stage Renal Disease”. Boom! (That hit me like a ton of bricks.) “Umm, you mean I have kidney failure! No! Not me. I’ve worked in dialysis. That can’t happen to me!”Of course, I was in complete denial. Both my PCP and nephrologist were very supportive mentally, physically, emotionally, and even spiritually. This information was so devastatingly painful that I started working harder and longer. I turned into a Superwoman with my family, work, and church. I was trying to drown out the fact that my health was being compromised, refusing to believe this could happen to me. I started to slow down in my daily functions, my appetite decreased, and I lost weight as a result. I thought that my weight loss was bringing my “Sexy Back,” only to realize that I am not exempt from sickness. My nephrologist assured me of a possible solution. He advised me to have my name placed on the waitlist of one of the transplant centers in Maryland.In October 2006, I had surgery to have an A/V fistula placed in my left arm to prepare for possible dialysis treatments in the future. In January 2007, I went to be evaluated for a kidney transplant. I was given 6 weeks to complete all required tests to secure a place on the transplant waiting list. Determination allowed me to complete all tests within 2 weeks.In April 2007, I was approved to be placed on the transplant list. In October, I had a PDC (Peritoneal Dialysis Catheter) placed in my abdomen so that I could dialyze myself at home. I loved it but it didn’t love me. It was removed in January 2008. Right afterward, I received my first unsuccessful call to be transplanted. (The kidneys were cystic and could not be used.) “Bummer.” I also received another call in April 2008 (Easter Sunday). Those kidneys were [End Page 134] at another hospital in Maryland, so if the waiting patient at their facility refused the kidney, I would be next in line. The patient accepted the donation. It wasn’t my turn yet.In the meantime, I had already started hemo-dialysis in mid-March 2008. On Saturday, June 21, 2008, while enjoying the weekend with my family, I received a call around 2:30 p.m. My youngest daughter and I were out shopping. We were in a crowded store that was going out of business, and I felt my phone vibrate. I noticed a slightly familiar number. I stepped out of the store to retrieve the call.“Mrs Ragin...Me: Yes.“Danette Ragin...Me: Yes.“We are calling from the University with an organ offer for you!”I told them they had me at the sight of the first few digits of the phone number they were calling from!In June... (shrink)

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

In lieu of an abstract, here is a brief excerpt of the content:I am Not Obese. I am Just Fat.Sarah BrambletteMy body mass index classifies me as super morbidly obese, however my overall vital health statistics would indicate otherwise. I celebrated the American Medical Association’s classification of obesity as a disease for several reasons. First, obesity as a disease involves other medical complications of which I have none, so finally perhaps I can say I am not obese, I am just (...) fat. I am fat, as in my weight is caused by Lipedema and Lymphedema. Lipedema is a congenital condition, which causes my body to produce and accumulate abnormal amounts of adipose tissue in my legs, hips, thighs, and arms. There is not much known about Lipedema in the medical profession, even though it was identified in 1940 by doctors at the Mayo Clinic, and not many treatment options exist. Abnormal Lipedema tissue does not respond to restrictive caloric diet or exercise. Lymphedema is a condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system. The second reason I celebrated obesity being classified as a disease was the hope that more research would be conducted on the actual causes and treatment of obesity and that research might include adipose tissue disorders. My vital health statistics are all normal, yet I still face challenges getting proper treatment in healthcare.My StoryAs I sat staring at the metal beast, I decided to make one final attempt to mount it. I placed my right foot on the step and used both hands to boost myself up, my lower legs were so large there was no room for my left foot. Immediately the exam table began to tip towards me, then slammed loudly against the tile floor as I quickly stepped off. It was a game of exam table teeter–totter I had played many times before and lost more often than won. I gave up, placed the sheet meant to cover my legs on the chair in the corner and squeezed myself down between its arms. The exam gown pinched my arms, barely covering the front of me and draped over my legs.My LegsOne of the main reasons I was seeing a new doctor, my first doctor visit in several years. My previous family doctor had retired. I was not ill, I was concerned. My weight had reached a point to where I was scared for my health and I wanted to get help and answers. I wanted answers about why my legs were so large and leaked fluid.The answer I got was one I had heard before “It’s your weight”.To the doctor’s credit, she did explain it a bit more, she said the fluid in my legs was due to my excess weight putting pressure on my legs. However, she did not actually know how much I weighed. The scale in her office only went to 350lbs, and even with the add–on weight it could not register a weight for me, so we only knew I weighed more than 400lbs. I asked her if she knew if the hospital or another office had a scale that could weigh me. She did not. She may have sent me home with a prescription for a diuretic, I do not remember. I know I was not sent home with any help for my weight or my legs, just a follow–up appointment. It was during that follow up appointment that I advocated for myself and asked if she would refer me for physical therapy, so that I could do some safe and monitored exercise. She agreed, and I began physical therapy in the pool.At the pool I met other people who looked similar to my size. I noticed their legs were normal size and wondered why? Then I thought about sumo wrestlers. Sumo wrestlers weigh hundreds of pounds and their legs are normal too. What was wrong with my legs? One day I heard a man in the pool tell another [End Page 85] patient that he had lost weight. I wondered where he was able to weigh himself, and hoped it was not rude to ask him. He told me... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:News and ViewsMark Gonnerman Click for larger view View full resolutionWhen I think of Roger Corless, I think of the bristlecone pine trees in the White Mountains of east-central California, about an hour's drive from Bishop up White Mountain Road. These trees (Pinus longaeva) are the world's oldest living beings. The senior member of the stand in Patriarch Grove, named Methuselah, is more than 4,700 years old.It is not (...) because Roger lived an especially long life—he was granted only sixty-nine-and-a-half years of calendar time—that he and these trees fuse in my mind. While Roger was an old soul from an older world, this association arises from Roger's adherence to the kind of "become who you are" eccentricity celebrated by Henry David Thoreau and other sages who remind each of us to "step to the music" of "a different drummer."When visiting the bristlecones, one is impressed by the various odd poses struck by each tree. Of course no two are alike; each holds a unique gnarly stance that says, "You are among a community of nonconformists." These trees remind us that each being is a unique expression of Nature and ought to be honored as such.Thoreau does not use the word "eccentric" in Walden, but writes of extravagance instead:I fear chiefly lest my expression not be extra- vagant enough, may not wander far enough beyond the narrow limits of my daily experience, so as to be adequate to the truth of which I have been convinced. Extra vagance! [End Page 155] it depends on how you are yarded.... I desire to speak somewhat without bounds; like a man in a waking moment, to men in their waking moments.A lover of words, as was Roger, Thoreau splits extravagance in two to highlight its root meaning: "to wander" (vagari) "outside" (extra). To learn the truth of matters requires the courage to follow one's own path, even when—especially when—it takes one beyond the pale. Only then might wanderers become convinced of those truths they know, for they have been encountered firsthand and tested, experimentally, in the realm of personal experience.When one sets about the challenging work of claiming a natural right to eccentricity, one discovers self-authenticating feedback loops that encourage further steps along an always unfolding, yet untrammeled path. It takes courage to stay in motion, for the way is often rough. People get lost—and found. One's own authentic way leads to wakefulness. This in turn enables recognition and enjoyment of other liberated beings and compassion for those who have yet to hear chanticleer crow (to stay with Thoreau) or the lion's roar (as Buddhists might say).As Mas Kodani, a Jodoshinshu minister in South-Central Los Angeles has observed, "One does not stand still looking for a path. One walks; and as one walks a path comes into being." This walk requires a balance of both confident perseverance and an ability to respond to ever-changing conditions. Lives of both the bristlecones and Roger demonstrate perseverance in spite of hostile habitats: the pines, rooted in sandstone and dolomite, hang on in a cold and dry climate at 11,200 feet; Roger made his way with difficulty in spite of challenges he faced as a gay, Buddhist-and-Christian intellectual in Durham County, North Carolina. When, after thirty years, Roger became an emeritus professor at Duke and relocated to the San Francisco Bay Area, he found himself in a much more hospitable setting.It may seem strange to draw out this comparison of Roger and those ancient White Mountain pines, but when I first met those trees in the summer of 1998, they set a standard for authenticity that came to mind whenever Roger and I interacted. His extravagant accomplishments as a teacher, scholar, and person who lived a life of genuine service to others were attained through the real work of daily spiritual practice, critical reflection, and adherence to the truths—always plural for Roger—of which he had been convinced. I'll always be grateful for his inspiring example of a human life well lived. It... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Let Me Pay Taxes!Alessia MinicozziThe first memory I have of knowing that I was different was when I was five years old and a caseworker entered my house to verify that I existed.At the age of one and a half, I was diagnosed with a chronic disease called Spinal Muscular Atrophy, Type II (SMA). This left me in need of constant care and, at times, hospitalizations. My whole life, (...) I’ve been confined to a wheelchair, and the disease has always affected me profoundly, on a physical and mental level. I have limited range of motion and strength in my arms, muscle weakness affects my speech and breathing, and, like a monkey on my back, SMA has been a constant reminder of my fragility and mortality.In order to comply with Pennsylvania’s disability requirements, a state–appointed caseworker had to make regular home visits to make sure my needs were being met under my parents’ care and that my parents were not lying about my medical needs. These visits would leave me confused and annoyed. I still remember the events that took place the first time a caseworker entered my house and the emotional impact it had on me.The time read 8:09 a.m. on my white clock radio. I wore my favorite pink satin nightgown. My mother came to lift me out of bed and enclose me in my robe. She whispered in my ear that a gentleman was here to meet me—he’d arrived early—and he wanted to ask me some questions. As my mother carried me down the flight of stairs and sat me in my wheelchair, I felt the man’s eyes on our every move. This strange man sat with a scrutinizing look and asked me if I live in this house and do I normally wake up so late? I quickly turned to my [End Page 210] mother and gave her a perplexed stare. Why was this person here at all, and what right did he have to inquire about me like this?Later, my mother would explain that the man was there to make sure that she was not lying when she asked the government for money to care for me. I endured countless visits from that caseworker over many years. Finally, I asked my mother, “When is this man going to stop visiting me and asking me the same questions?” She looked at me and tenderly replied that when my father finished his residency program, then we would have enough money to pay for all my care. I accepted this response and continued playing with my Barbie. Two years later, my father completed his residency program and the visits from the caseworker stopped.In eighth grade, I left an all disabled school and enrolled in a mainstream public school, which seemed odd to me. I asked my parents why the change in schools? My parents explained that they will not live forever and in order for me to live outside an institution, I will need a salary that is above average to pay for personal care. They went on to explain that the only way to accomplish this goal is to succeed in school and to perform better than everyone else. They informed me that because I use a wheelchair, prospective employers will view me as daunting and they may be less likely to hire me. They stressed that the only way to stand out above other non–disabled candidates is to excel in an academic environment. Mom and Dad have always ended the conversation by reassuring me that as long as they are alive, they will make sure I accomplish everything I set out to achieve and that I never feel alone.Since that conversation over twenty years ago, I had only one goal in mind: employment. The possibility of being institutionalized has always been my motivation for persevering through late nights of writing papers and studying for exams. As promised, my parents were the ones who proofread my papers and stayed up with me in order to help me to bed once I was done. When I graduated from the University of... (shrink)

Every person in the course of his or her life has some contact with the medical profession. And in recent years that profession has been revolutionised in the fields of research, of technology and of practice. Hardly has one advance been declared than it is superseded by another. At the same time, while community attitudes themselves change, group practices have taken some weight from doctors but perhaps have diminished the doctor/ patient relationship of previous years. Another change in the oversight (...) of the medical profession has been the growth of what is called medical ethics. What, for example, is the amount of information a doctor should give a patient prior to performing an experimental procedure? Amongst all these changes there are still fundamental issues where doctors have to use their personal judgment as to what to do or what to say. For Max Griffiths this is where ethical considerations become matters of medical morality. He outlines a broad range of situations which frequently confront both doctor and patient, requiring sympathetic understanding on each side. Some of these arise out of the radical changes which have occurred in community attitudes and practices. Abortion and euthanasia are two important examples. Others range from growing pains and teenage trauma to ageing and dealing with dying and with loss. From his extensive associations with patients in a wide variety of situations the author tackles those issues which demonstrate what makes a good doctor. The result is a book that is for doctors and patients alike. Max Griffiths' involvement in medical matters range from responsibility for outback hospitals in places like Birdsville, Oodnadatta, Halls Creek and Fitzroy Crossing to long term membership of the board of the Austin Hospital in Melbourne. In this latter capacity he chaired committees responsible for the oversight of medical research, especially the protection of patients' rights. He was also involved in similar committees at the Royal Children's Hospital in Melbourne and the Royal Darwin Hospital. As a long term minister of religion his visits to his parishioners both at home and in hospitals gave him a deep insight into their anxieties. He was also a foundation member of Ronald McDonald House and chairman of several institutions engaged in the care of children with disabilities. [Subject: Sociology, Health Care, Medical Ethics]. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:UnbefriendedJean Watson“Can you be a friend to someone who needs one right now?”That probably wasn’t the question that our hospital clinical ethicist asked, though that is what I recall. It sounded like something my mother would encourage me to do. It sounded like something I would like to do. It sounded easy. It was none of that and so much more.Two weeks earlier, a man was found down (...) in his apartment, unresponsive. He had had a stroke. He was hospitalized in our ICU on a ventilator. He had no family or friends to speak on his behalf. Decisions needed to be made. Should he undergo surgery to place a tracheostomy and feeding tube to continue his life?The hospital hired a private investigator who performed yeoman’s work, trying to find someone who knew this man, someone who might be able to share information about his values so that we could act in accord with them. Remarkably, no one was found. The patient had been retired from work for more than a decade. Though he rented an apartment, his landlord did not know him. No family was discovered. No friends came forward nor were identified. No medical records were uncovered. He had not seen a doctor or visited a clinic or hospital in the area until now. He was a solitary person, a human being without close relationships. His apartment was unkempt; beer bottles were strewn about the place.The clinical team requested an ethics consultation. Though the hospital does not have a formal policy for decision making at moments like these, our ethicist is well-versed in a variety of ways these circumstances are handled. Sometimes a treating physician functions as both the attending and a surrogate. This can be fraught with potential conflicts of interest. Unconscious bias could influence one’s thoughts about the value of a life and the cost to sustain it. Sometimes the attending provider presses on with therapies regardless of the likelihood of successful treatment. This choice fails to acknowledge individual autonomy. It fails to weigh the suffering required to live another day. It sidesteps the thorny issues that are discussed everyday between providers, patients, and loved ones.The ethicist gathered a group to serve as informal surrogates for this patient. Three of us agreed to act as friends and decision makers for this man, helping the treatment team determine next steps. The ethicist provided a few rules and much oversight.We met for a family conference. The intensivist and neurologist shared the diagnosis and treatment that the patient had received. They detailed information about the decisions that needed to be made. The patient’s nurse, the social worker, and the spiritual care intern attended the meeting to watch the proceedings and contribute to the discussion. We three, the patient’s friend group, were invited to ask questions. We had some.I am a hospitalist, an internist working in a hospital caring for patients. I have done this work for 25 years. I know the intensivist and the neurologist well. We have worked together, caring for many people over the years. My two surrogate partners were a nurse and a chaplain. The nurse had decades of professional experience, including in the intensive care unit. The chaplain was experienced in her work and comfortable with the challenges that arise in a hospital.The three of us had a robust discussion. I shared what most patients tell me when I ask about resuscitation status. “I don’t want to be kept alive on machines,” or “I don’t want to be a burden.” The ethicist gently reminded us that we were tasked with making a decision on behalf of this person, irrespective of what others would decide for themselves. It was challenging to tease out clues [End Page 10] that could guide us to what this man might choose for himself.Because of the location of his stroke, the patient was not expected to regain consciousness. He had been off sedation for more than a day and had not woken up. For the rest of his life, he would be institutionalized, ventilator dependent, and sustained with nutrition administered via a... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:I Saw My ReflectionAdrienne Feller NovickI saw my reflection as I looked through the window of the isolation room. The image caused me to pause and look again. The reflection of sunlight had merged my image and the patient's together. For a moment, we seemed to be one person.She was pale with translucent skin, her bald head obscured under a colorful scarf. Her three children sat as still as (...) statues, staring at their mother wordlessly. Then, I realized her children appeared to be the same ages as my children. I felt a surge of emotions jumbled together, a mother should not die like this, leaving her young children motherless. She and I shared the exact same birthday; it could have been me in that hospital bed. However, I did not have a terminal diagnosis and my children were safe at home, complaining about doing homework. In the blink of an eye, without even recognizing what had just happened, I was face to face with my mortality.I tampered my emotions and held them back. I collected myself, and remembered the reason I was there. My professionalism took charge. I am a member of the Medical Ethics consultation service at a large healthcare system. A request was made to help with the ethical dilemma of a patient with a grave prognosis unwilling to discuss a hospice referral. The dilemma here represented two issues in conflict: patient autonomy and provider beneficence versus non-maleficence. Respect for autonomy allows each person the right to make informed decisions about their care that respect their values and personal beliefs. Provider beneficence is balanced by non-maleficence: beneficence is the expectation that physicians make treatment decisions in the best interest of the patient and non-maleficence guides physicians to minimize harm. This case called for analyzing the balance of autonomy with proportionality, weighing the risks versus the benefits of treatment decisions.I knocked on the door and they all turned and looked in my direction. The patient signaled me to enter. Although she was smiling, the sadness in the room was palpable. I introduced myself to the patient and her children and diplomatically explained the reason for my visit. I turned to the children and asked if there was anything I could get for them. I got three weak "no thanks." I asked the patient if I could stop by later. Then, I went to see my next patient. When I returned, I listened with rapt attention as she described the mosaic of her life story. When she finished, we sat together for a long time, neither of us speaking. Out of the blue, she told me she was not afraid of dying. She said she would welcome death to end her pain. She continued, explaining that her fear was that her children were not ready to accept her death. She was worried about how her death would hurt them, and all she wanted to do was to protect them. She reiterated her wish to be kept alive with all aggressive medical treatment possible. She communicated [End Page E6] that she understood and appreciated the severity of her condition. Her reason for continuing treatment was to give her children precious time. She said, "I would lie in front of a car to protect my children." As I was heading towards the door, her eyes welled up with tears. She thanked me for listening and for my kindness. We said our goodbyes. She remained full code and died four days later during cardiopulmonary resuscitation. I walked past her empty room later that day and kept walking.I was not prepared for how her death changed me. Throughout my career as a healthcare professional, I have primarily worked with patients at the end of their lives. I have seen many empty rooms following the death of a patient and helped countless people journey through their stages of grief towards acceptance. After I complete a consultation, I move on to the next patient. I do this every day. This time, something was different. After she died, I was not sleeping well, I had a hard time concentrating, I was not eating well, and I was... (shrink)

Prof. Berna Arda, is a graduate of Ankara University Faculty of Medicine 1987, has medical specialty and PhD degrees in History of Medicine and Ethics and, teaches at the Department of Medical Ethics and History of Medicine in Ankara University Faculty of Medicine, Ankara, Turkey. Her main research and publication fields are science ethics, human rights, woman and bioethics, medical law, ethics education and disease concept in history of medicine. She was a visiting scientist at Boston Children’s Hospital (...) and Harvard Medical School, between February - July 2015 and a guest professor at the University College of London, History of Medicine Center, between January and June 2008. She is the founder chairperson of Turkish Bioethics Society, Member of High Disciplinary Committee of Turkish Medical Association. Governor, Vice President and Executive Committee member of World Association for Medical Law, one of the founders and the first president of International Association for Education in Ethics. (shrink)

Some doctors and nurses played a key role in Nazism. They were responsible for the sterilization and murder of people with disabilities. Nazi doctors used concentration camp inmates as guinea pigs in medical experiments that had military or racial objectives. What we have learnt about the behaviour of doctors and nurses during the Nazi period enables us to reflect on several issues in present-day medicine. In some authors' opinions, the teaching of the medical aspects of the Holocaust could be a (...) new model for education relating to professionalism, Human Rights, Bioethics and the respect of diversity. Teaching Medicine and the Holocaust could be a way of informing doctors and nurses of violations of Ethics in the past. Moreover, a Study Trip to Holocaust and Medicine related sites has a strong pedagogical value. Visiting Holocaust related sites, T4 centres and the places where medical experiments were carried out, has a special meaning for medical students. Additionally, tolerance, anti-discrimination, and the value of human life can be both taught and learned through this curriculum. The following article recounts our experiences of organizing and supervising a study trip with a group of medical students to some Holocaust and medicine-related sites in Berlin and Hadamar. The study tour included lectures at universities in Düsseldorf and Berlin. (shrink)

This paper explores the meaning of teacher–student relationships in the light of Derrida’s notions of hospitality and trust. Drawing on Derrida, the author delineates two aspects of educational hospitality: hospitality without determinacy and hospitality as self-surrender. It is argued that educational hospitality is underpinned by trust. A sound teacher–student relationship, the paper concludes, consists in educational hospitality and embedded trust.

In lieu of an abstract, here is a brief excerpt of the content:Advocates, Not Problem ParentsAnonymous TwoNothing could have prepared us for the shock of hearing that our son had a brain tumor.Rob* was 13½, an active, healthy eighth grader, when he developed a headache so bad he couldn’t get out of bed in the morning. We saw the pediatrician three times over the next ten days. On the third visit, after ruling out problems at home, stress at school, strep (...) throat and mono, he sent us for an MRI. When the radiology tech handed me the films and told us to drive back to the pediatrician’s office, I knew we were in trouble. Sure enough, after all the other patients had left, our long–time doctor called us into his tiny office, shut the door and fumbled with the films as he pointed to a white spot that he said was a brain tumor.So began the experience that would change the course of our lives. We remember the diagnosis in detail and relive it in slow motion. We recall packing suitcases, driving to the hospital, waiting to be seen in the emergency room, and walking through doors marked “Pediatric Hematology/Oncology” for the first time.We date everything “BC” (Before Cancer) or “AD” (After Diagnosis). We are grateful every day that [End Page 13] our son is alive, but we know he is forever changed. We are changed: Our nuclear family, our extended family, everyone who knew us and supported us at the time was affected. A pediatric cancer diagnosis is a bomb that shatters your world without warning. If you’re lucky, you can pick up a lot of the pieces, maybe even most of them, but the world you re–enter is never the one you inhabited before.Our doctor delivered the diagnosis to Rob and me at the same time. I’ve thought about this many times and perhaps one day will ask him: Why did he choose to do it that way? Was it a conscious decision or just happenstance? Was it kinder, in the long run—like pulling off a band–aid quickly—or terribly risky? What if I had collapsed at the news? I asked to step into the hall to use the phone. In a state of numbness, I called my husband. He knew we had had an MRI a few hours earlier. “Come quickly,” I said. “There’s a mass.”We chose to go to a top-ranked major medical center and were admitted that evening. A couple of days later, the discovery of tumor markers in Rob’s cerebrospinal fluid and blood confirmed a central nervous system mixed germ cell tumor. We were told he would require six cycles of chemotherapy, followed by six weeks of radiation, and possibly second–look surgery and high-dose chemo with stem cell rescue on top of that. We were given a consent form listing a catalogue of short–and long–term side effects, among them the likelihood of infertility. We were urged to start treatment as soon as possible.By sheer coincidence I had just completed a project for a small, nonprofit organization that existed to inform young adult cancer patients about their fertility rights and options. I knew that infertility concerns were usually pushed aside at diagnosis to make way for other priorities, namely the urgency of starting treatment. And that’s exactly the kind of pressure we were facing.But my husband and I were not ready to sign away our son’s fertility in what felt like a no–confidence vote, a capitulation. We needed to believe that he would survive and put this horror behind him, that he would look forward to marriage and starting a family. We were willing to cede nothing to the disease at this early stage of the game. Was this rational, naive or selfish on our part? I don’t know.The medical team seemed surprised when we asked for a delay in treatment in order to collect sperm samples. They warned that our son’s condition could decline suddenly—and that postponing treatment by even several days might be dangerous. However, at our insistence, they agreed to the delay... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Searching for Peace in DeathLaura WachsmuthDisclaimers. No funding was utilized for this manuscript. The author, Laura Wachsmuth, has worked at several hospitals. The opinions contained herein are her own. All names have been changed to protect the privacy of the patient and the patient's family.I first met Ellen when she was admitted to the Women and Infant unit on a late spring day in May. She was 27 weeks (...) pregnant and was experiencing intense abdominal pain.As a hospital chaplain, I support patients and their families emotionally and spiritually. Sometimes, this looks like praying with patients; other times, it looks like sitting in quiet because there are no adequate words. Over time, I have developed ways to help me cope with the intensity I witness daily. Still, cases come up that I must grieve. The case of Ellen is one such example.The first time I met Ellen, she was waiting to hear back about her scans and tests. A quick look at her chart and a conversation with the medical team revealed that she was in her mid-thirties. While she spoke English fluently, she had immigrated to the US, and English was her second language. She, along with her husband, Mark, and their young son, had come to the United States on a work visa.After knocking on the door and entering her dim hospital room, I noticed right away what a beautiful person Ellen was, inside and out. Lying in bed, her long dark hair piled up on her head, her slim figure was visibly pregnant underneath her hospital gown. She smiled and gently greeted me. Mark was at her side. Clearly, Ellen was in physical pain, and while she and Mark still hoped the doctors were wrong in thinking she may have cancer, the emotional strain of waiting lay heavy upon them.Ellen and Mark kindly welcomed me and were attentive as best they could as I introduced myself and explained my role as a chaplain. They told me [End Page 75] that they were spiritual, not religious, but welcomed chaplain visits. Both exuded a certain peace and kindness, which was striking considering all they were enduring.As Ellen and her family waited for the results to come back, I waited as well and frequently checked her medical chart, looking for updates. About a week after she was first admitted, the medical team broke the dreaded news: Ellen had stage IV gastric cancer; it was estimated she only had 11 months to live. At this point, the Palliative Care team became involved in Ellen's care, and the chaplain on this team supported Ellen through the shock of her diagnosis and the difficult treatment choices she faced.Originally, the plan was for Ellen to deliver her daughter at 29–30 weeks and then to receive 2–3 rounds of chemotherapy. After further deliberation, however, it was decided that it was riskier to deliver a baby at 29–30 weeks than it was to undergo chemotherapy while pregnant, so Ellen began chemotherapy while still carrying her baby. Her chemotherapy was not a curative treatment, but there was hope it might give her more time.While my role became more peripheral at this point, I continued visiting Ellen. She was often tired or in pain, so I was mindful to keep my visits short. Mark, who stayed with his wife day in and day out, was usually in the room when I came by, and I often inquired after his well-being. Since Ellen and Mark's families still lived abroad, Mark was Ellen's primary support, and needed care and support himself.After two rounds of chemotherapy, Ellen made the decision to stop treatments. She made this decision because she was concerned about the risks of chemotherapy on her baby. It was an agonizing decision, and even after she made it, Ellen turned it over in her mind. During one of our visits, she asked me if I thought she had made the right decision. I told her that I fully supported her, but as I left her room, I wondered if I had done the right thing in affirming her choice. Looking... (shrink)

This paper focuses on the current international refugee crisis and the ways in which it is leading to sharp symbolic and physical violence through the process of “othering.” Based on Hannah Arendt’s discussion of statelessness and the question of the right to have rights, and Giorgio Agamben’s discussion of Homo Sacer, as well as drawing on other key authors such as Judith Butler, we argue that conditions of extreme human vulnerability and dangers of totalitarianism are being radically worsened by (...) the ethnicized and racialized denial of the other, that is, of human rights. Rather than advocating an abstract cosmopolitanism, however, without strong purchase in contemporary social life, the paper concludes by noting the need to place oneself in a position of discomfort, in order to confront the tension between particularistic attachments and universalist aspirations, between the multiplicity of laws and the ideal of a rational order common to all polities, between belief in the unity of humankind and the healthy antagonisms and tensions generated by human diversity. (shrink)

Kant’s theory of international politics and his right of hospitality are commonly associated with expansive projects of securing human rights or cosmopolitan governance beyond state borders. This article shows how this view misunderstands Kant’s criticism of the law of nations ( ius gentium) tradition as handed down into the eighteenth century as well as the logic of his radical alternative, which was designed to explain the conditions of possibility of global peace as a solution to the Hobbesian problem of (...) a war of all against all in the state of nature. I resolve longstanding confusion over the meaning and justification of Kant’s right of “hospitality” by showing how it functions not as a freestanding positive claim demanding enforcement but as a way of ruling out specious justifications for war against those the traditional law of nations permitted one to label “enemies.” This poses important questions for contemporary theories of global justice. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:A Prayer for the BabyKatherine J. GoldWe didn’t talk much about religion in medical school. Rightly so, it seemed to me at the time. I didn’t know how or why it would fit in to my patient care other than respecting patients who used their faith as a coping strategy. I was not at all religious and didn’t like the thought of talking about such things with patients. And (...) in my clinical experiences, it rarely came up.When I got to my last year of school, I signed up to work for a month with an obstetrician–gynecologist in her outpatient clinic. I don’t recall how I met her but remember she was respected for her outpatient teaching so it seemed like it would be a good experience to work with her. (I’ll refer to her by a fictional name here.)“Call me Maria,” she told new patients, enveloping them in a warm, supportive style. They did, and I adjusted to her caring approach, shadowing her as we saw patients during pregnancy, those with abnormal uterine bleeding, patients with pelvic pain, others needing pelvic surgeries. It was an odd experience for me, six months pregnant myself, to be seeing other patients during their own pregnancies.One day, about a week in to my rotation, a couple came in together for an appointment two weeks after an early miscarriage. I watched Dr. Copeland (as a student I just couldn’t call my attending by her first name) give them a hug and we sat down. She asked how they were doing and they shared their story, tears flowing as the mother recounted her emotions over the last week and support from their friends. I had the impression that they attended the same church as Dr. Copeland from their conversation. At the end of the visit everyone stood up.“Shall we pray?” Dr. Copeland asked, and they all took hands. I edged back, away from their small circle, uncertain what to do. I had never seen prayer in medical practice and certainly not initiated by the doctor. Not being religious myself, I felt uncomfortable. I didn’t know the protocol. This was not a setting where I knew what to do. So I leaned [End Page 200] quietly against the wall, trying to be unobtrusive, feeling my baby kicking while I watched. All of them bowed their heads and Dr. Copeland said a brief prayer. I watched the mother as her shoulders relaxed. They said “amen” and squeezed hands and hugged one last time. I thought about that interaction for weeks afterwards. I was uncomfortable, but clearly the patients were not. If there were a role for religion in medicine, I reflected, this might be a place for it. It had been accepted by the family without hesitation, so somehow Dr. Copeland knew it would be alright. It had been used in a healing way.There were several other visits where Dr. Copeland prayed with patients. Sometimes she seemed to know them from her church; at other times, I wasn’t sure. But there never seemed to be a misstep—patients never seemed surprised or awkward with her approach. Did they choose her because of shared beliefs? Did she have a reputation of using faith in her practice and patients selected her for this reason? I wasn’t sure. But it was always the same. They would bow their heads and pray. I would stand back a little uncertainly, but the patients were always grateful and appreciative, thanking Maria by her first name as they left.As I spent more time with her, I looked for other ways that faith might impact Dr. Copeland’s practice and asked questions when I thought there might be relevance. I knew from others that she was opposed to abortion, though I never heard her talk about it openly and I was unsure how this might be manifest in her practice. I watched her prescribe birth control (I knew some religious physicians who did not). I watched her send a patient with a second trimester fetal death to the hospital to be induced for delivery. I wondered if someone... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:On PartnershipRyan Schwarz, Duncan Smith-Rohrberg Maru, Dan Schwarz, Bibhav Acharya, Bijay Acharya, Ruma Rajbhandari, Jason Andrews, Gregory Karelas, Ranju Sharma, and Mark ArnoldyRecently, Bayalpata Hospital, in the rural district of Achham, Nepal almost collapsed under the weight of its own staff's discontent. The hospital had been largely abandoned until 2009 when our organization, Nyaya Health, renovated and opened it in partnership with the Nepali government. Since then, (...) the hospital has seen great progress and has experienced widespread community support. Nonetheless, earlier this year, a broad-based staff revolt occurred, led primarily by our senior clinical staff members, raising concerns that Nyaya's management policies were ineffective, and wages and benefits were too low. The unrest included everything from a strike, limiting services to our patients, to aggression against non-strikers and slander and racist comments in public media against the Nyaya Health Board of Directors. Ultimately, the conflict was resolved, though not without the departure of our three most senior clinicians. The incident deeply damaged staff morale [End Page 101] and impeded basic services to our patients, and from our perspective as a leadership and management team, it was deeply troubling and spiritually challenging. We have learned much in the wake of the strike, but here we focus more narrowly on the concept of partnerships in our work by examining the recent strike and the two key issues that lead to it: wages and benefits, and management policies at Bayalpata Hospital.In grappling with the recent staff crisis, some of our leadership team expressed concerns that we would never be able to develop a true partnership in Achham if our senior-level employees led strikes against the organization. The leaders of the strike were our most well-educated and high-ranking staff. They were also individuals who had come to work for us specifically citing the moral imperative of our work, and their pride in helping to serve the poorest of the poor. One leadership team member asked, "What is 'partnership' then? We came into this work with the premise that we would work together, with our partnership built around the right to health—but who are our partners if they lead strikes damaging the very services our collective mission aims to offer?"Another leadership team member commented, "The first time I visited Achham I was invited for tea at Meena's* house (one of Nyaya's midwives). We arrived at her house and Meena greeted us warmly. She showed us in to a small room: there was no furniture, but there was an immaculately swept mat which we joined her on. We drank tea, seated on her rug, and listened to her tell us how she had come to live in the house, how she had come to work for Nyaya, and her pride in now being able to provide both for her own children, as well as, the children of her relatives. As the only employed family member, she now had the challenge of providing for all of them. When we question our partnership, I'm taken back to Meena's warm, but extremely poor, home. She has worked for Nyaya for almost four years. She has helped our organization provide free care to over 75,000 people. Is this not a type of 'partnership'?"Allow us to offer some background on the issue of wages—Meena has been with our team since 2008, and has been paid about $2,500 per year—a generous wage compared to other employers in the region. Meena was one of the striking staff members. Among other concerns about the way the hospital was being run, she and other staff asked indignantly why we couldn't provide them with higher wages, better benefits, and more resources, both for her and the hospital. Notably, Meena's salary (and the rest of our staff's) was well above her equivalent in other, more urban hospitals (to compensate for the extremely remote area in which we work), and in a district where most families are farmers, our staff's salaries occupy the highest income bracket in the region. Nonetheless, as is common throughout the world in both rich and poor areas... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Lives Saved, With a Little Help from FriendsPrasanta TripathyIn November 2000, Jharkhand was carved out of Bihar, a state in eastern India, to be a separate state to fulfill the aspirations of its people and [End Page 109] allay their feeling of alienation. It was a good time for me to reflect on how best I could contribute. In 2002 Ekjut, a registered development organization, was set up by (...) myself and other like-minded colleagues. Ekjut, which means "togetherness," was the outcome of a longstanding desire to do something on our own, something that was close to my heart—doing something for and with the people I had grown up with. An invisible cord kept me attached to this region of India and after stints with a few development organizations within and outside the state, my wife, Nirmala, and I decided to relocate to a village near my hometown, Chakradharpur.Chakradharpur is a small railway township in South Bihar where I spent all my childhood and days of schooling. Beyond the periphery of this township and its satellite market place, live indigenous people, the Adivasi, in villages and hamlets. Even as children we could appreciate the government policy that protected them in the sense that their ancestral lands could not be acquired by Dikus, the non-tribal people living in the towns and cities. The un-spoilt bounties of nature protected and preserved by the original inhabitants of the land—the Adivasi people—was there for all of us to see and enjoy.A rumor that a doctor couple was building a nursing home led to a regular flow of men, women and children to our unfinished home with all kinds of ailments, including medical emergencies. It was becoming increasingly difficult to cope with the workload of constructing the house and at the same time—overwhelming to see children dying in our home, which was never meant to be the hospital that the villagers thought it to be. They were reluctant to visit the government hospitals, which were primarily meant to serve poor people and their attitude could be summarized in just one word—fatalism. We wanted this to change—they somehow needed to understand their rights and entitlements. The public health care system had to be strengthened and Nitmala and I wondered how our work could make this happen.The Adivasi people were soon to become partnering communities with Ekjut. It did not take us long to realize how unprotected they were. We had a vague idea that we wanted to build healthier communities. Providing full-time curative care was not an option; it was also beyond our means. Knowing that strengthening the health system would take time, we hoped that our community-based work would strengthen the demand side, since even the minimum services that were available were grossly under-utilized.India is home to about 10 million tribal people. We had seen and also knew that their health status was poor and that tribal people have the disproportionate burden of child mortality, malnutrition, malaria and death in childbirth. But we could not find a reliable existing data base that could guide our work. The health status of women and children soon became Ekjut's main concern.We wanted our work to generate knowledge that would be relevant in a wider context. Adivasis are not a monolithic entity and our evidence needed to grow from working with several different tribal groups. We needed to build our research capabilities and willingness to work with several different indigenous groups, as well as, the poor people living alongside them in different districts. A collaboration with University College of London was soon to follow. Professor Anthony Costello who was my teacher more than a decade back, invited me to partner with his department and jointly bid for a grant. This grant was likely to come at the confluence of several interesting developments. First, the self-help group movement in India had made a substantial jump and such groups existed in almost every village. Second, a grassroots organization called PRADAN was working with women's groups to strengthen their livelihoods in several states of India including our district. PRADAN shared with... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:'Difficult Patient':A Reflective EssayDaniel McFarlandThe patient who sat across from me knew too much about all brain tumors. According to her, she would never know enough about the one sitting uncomfortably close to her brain's temporal lobe. In her quest for the 'right' answer to her meningioma problem, she became certain that its surgical removal would upend her life, leaving her in neurological taters.She was a small business owner (...) of a practice dedicated to medical massage. Indubitably, she had helped countless clients heal themselves of medical mishaps and avoid or recover from the tyranny of [End Page E13] a medical community that did not always provide respectable, hospitable care. She was certain a craniotomy would end her business, nullifying everything she had spent her life building. She became fluent in the legalese needed to transfer or sell her business in anticipation of surgery. To stave off losing her life's work from a surgical mishap, she sought opinions from a dozen neurosurgeons. They reassured her that a routine surgery like this would be effective with little chance of neurological collateral damage. She did not believe them. In her business she had treated numerous exhausted professionals. Many surgeons with whom she worked professionally frequently referred patients to her. She had seen the poor self-care that many surgeons and doctors brought on themselves in the form of unrelenting stress, drinking, bad eating habits, and even drugs. This made her nervous and untrusting about the care she could receive at the hands of an overworked or impaired surgeon. She scheduled appointments with every neurosurgeon she could find and interviewed them relentlessly, looking for the slightest sign of incompetence, unprofessionalism, antipathy, or lapse in compassion. Given her insistence and dogged nature, she usually found what she was looking for. She would bring her research to the appointments and interview the neurosurgeons on what other doctors had opined. If they were incredulous of research she brought or a technique on which she inquired, they were summarily dismissed.At first glance, which is likely all that she got from many of her visits, these encounters put a spotlight on a 'difficult' patient refusing care. The deeper look that my patient deserved revealed a personal narrative of the oldest child who survived a broken home riddled with drug use and prostitution. She learned to rely on only herself for protection. She took unapologetic control of her fate. Her own mother had at one time offered my patient work as a prostitute. Her father was no better in providing protection and a decent upbringing. He had left her as an eight-year-old with the neglectful mother and four younger siblings to fend for herself, which she did against the odds. She suffered physical, emotional, and spiritual abuse.As an adult, her strong sense of selfhood and boundaries allowed her to have a guarded relationship with both of her parents at a comfortable emotional distance. Her mission and passionate drive to help others heal saved her life. In healing others, she was healing herself. Importantly, her experience marked for her indelibly that while she could do this for herself, others were not reliable and could not heal her. She had only ever trusted and relied upon herself. She was the only one who had never let her down. She was terrified that this might be the first time. The potential surgery risked her cognition, physical capacities, and ability to care for herself. The risk was too great.We met numerous times, uncovering her past, reliving the stories of her tumultuous background, and examining how she established her place in the world away from the horrors of her insecure childhood. She took in my reaction to her stories and saw the horror on my face when I tried to imagine a world where one's parents were not only neglectful but the source of danger. Through my reaction, she may have begun to have some compassion for her own story and put the pieces together. One several occasions, she became enraged when I didn't meet her expectations, or I didn't entertain the diatribe of neurosurgical scholarly work.On one of those... (shrink)

The purpose of this study was to examine patients' rights in Finnish hospitals from the patients' own points of view. In 1993, a new Act on the status and right of patients in health care came into force. In this Act patients' rights are divided into three categories: the right to good health care, the right to be informed, and the right to self-determination and participation. These same categories of rights were used in this empirical investigation during (...) 1993, in which a questionnaire was answered by 204 patients in two Finnish hospitals. The results indicate that Finnish hospital patients do not know enough about their rights. Information seems to be one of the most problematic areas for hospital patients. The study will be repeated in five years' time. (shrink)

Derridean hospitality is seen to undergird ethical teacher–student interactions. However, hospitality is marked by three aporias that signal incommensurable and irreducible ways of being and responding that need to be held together in tension without eventual synthesis. Due to the sociopolitical materiality of race and the phenomenological difference that constitutes racialized bodies, educators of color in interaction with white students are called to live the aporetic tensions that characterize hospitality in distinctive ways that are not currently emphasized in the discourse (...) on the educator’s responsibility as it is informed by an ethic of hospitality. The asymmetrical nature of hospitality is reconfigured through the terms of eros and hospitality’s link to education aimed at social justice is posited to be stronger than is currently suggested in the educational theory literature. (shrink)

Marshall and colleagues (2024) contribute to the literature on autonomy and decision-making capacity by focusing on the case of individuals with opioid use disorder who refuse to remain in the hosp...

The European Convention on Human Rights has been incorporated into UK domestic law. It gives many rights to patients within the National Health Service (NHS). This article explores the concept of patients’ right to privacy. It stresses that privacy is a basic human right, and that its respect by health professionals is vital for a patient’s physical, mental, emotional and spiritual well-being. I argue that health professionals can violate patients’ privacy in a variety of ways. For example: the (...) right to enjoy their property; the right to protect their medical and personal information as confidential; the right to expect treatment with dignity during intimate care; and the right to control their personal space and territory. Some preliminary evidence indicates that many health care practitioners, including nurses, are presently unaware of the articles of the Convention and the implications of the Human Rights Act 1998. In order to prevent litigation for breaches of patients’ privacy, it is advocated that universities and other educational institutions, the Government and NHS trusts should help to produce a clear educational strategy and protocols so that students and practitioners are well informed in this field. Although 41 European countries are presently the signatories of the European Convention on Human Rights, including the UK, it is important to stress that the principles discussed in this article are applicable world-wide. (shrink)

Background There is little dispute that the ideal moral standard for surgical informed consent calls for surgeons to carry out a disclosure dialogue with patients before they sign the informed consent form. This narrative study is the first to link patient experiences regarding the disclosure dialogue with patient-surgeon trust, central to effective recuperation and higher adherence. Methods Informants were 12 Israelis, aged 29–81, who underwent life-saving surgeries. A snowball sampling was used to locate participants in their initial recovery process upon (...) discharge. Results Our empirical evidence indicates an infringement of patients’ right to receive an adequate disclosure dialogue that respects their autonomy. More than half of the participants signed the informed consent form with no disclosure dialogue, and thus felt anxious, deceived and lost their trust in surgeons. Surgeons nullified the meaning of informed consent rather than promoted participants’ moral agency and dignity. Discussion Similarity among jarring experiences of participants led us to contend that the conduct of nullifying surgical informed consent does not stem solely from constraints of time and resources, but may reflect an underlying paradox preserving this conduct and leading to objectification of patients and persisting in paternalism. We propose a multi-phase data-driven model for informed consent that attends to patients needs and facilitates patient trust in surgeons. Conclusions Patient experiences attest to the infringement of a patient’s right to respect for autonomy. In order to meet the prima facie right of respect for autonomy, moral agency and dignity, physicians ought to respect patient’s needs. It is now time to renew efforts to avoid negligent disclosure and implement a patient-centered model of informed consent. (shrink)

Promoting ethical medical practices and preserving human rights principles require an understanding of patient rights. Studies show varying awareness levels among patients regarding their rights. This study aims to assess the level of awareness among patients in Palestine about their rights and the compliance of healthcare professionals. A cross-sectional study was conducted between November 2023 and January 2024 in the Northern West Bank cities. Data collection was conducted by three trained medical students utilizing an interviewer-administered questionnaire. (...) The association between participant characteristics and awareness was assessed using the Chi-square test, followed by a multivariate regression analysis to control for confounding variables. Of 400 patients surveyed, 47.0% had good awareness of their rights. Multivariate analysis showed that awareness was associated with patients in the age group of 18–30 years and 46–60 years, having private insurance, more prior hospitalizations, non-governmental settings, and prior charter awareness. Awareness was highest for respectful care and lowest for staff introductions. Non-governmental facilities performed better than governmental on explaining procedures, alternatives, and costs, though both settings scored highly on non-discrimination and consent. Our findings underscore global gaps in ensuring adequate patients’ rights awareness and implementation, with over half exhibiting inadequate knowledge. Significant deficiencies exist in involving patients in decision-making, informing about procedures/costs, and providing accessible complaint mechanisms, particularly in governmental facilities. Comprehensive, culturally-appropriate initiatives involving multisectoral collaborations are crucial to drive substantive reforms translating patient-centered care principles into consistent practice worldwide. (shrink)

These two lectures by Jacques Derrida, 'Foreigner Question: Come from Abroad' and 'Step of Hospitality/No Hospitality', derive from a series of seminars on 'hospitality' conducted by Derrida in Paris, January 1996. The book consists of two texts on facing pages. 'Invitation' by Anne Dufourmantelle appears on the left clarifying and inflecting Derrida's 'response' on the right. The interaction between them not only enacts the 'hospitality' under discussion, but preserves something of the rhythms of teaching. The book also characteristically combines careful (...) readings of canonical texts and philosophical topics with attention to the most salient events in the contemporary world, using 'hospitality' as a means of rethinking a range of political and ethical situations. For example, Antigone is revisited in light of the question of impossible mourning; the trial of Socrates is brought into conjunction with the televised funeral of François Mitterrand. (shrink)