When a group of doctors and nurses from Boston, Massachusetts, provided evaluation and heart surgery to children in Ghana, they encountered three rationing dilemmas: (1) What portion of surgery slots should they reserve for the simplest, most cost-effective surgeries? (2) How much time should be reserved for especially simple, nonsurgical interventions? (3) How much time should be reserved to training local staff to perform such surgeries? This article investigates these three dilemmas.

This discussion paper considers how seldom recognised theories influence clinical ethics committees. A companion paper examined four major theories in social science: positivism, interpretivism, critical theory and functionalism, which can encourage legalistic ethics theories or practical living bioethics, which aims for theory–practice congruence. This paper develops the legalistic or living bioethics themes by relating the four theories to clinical ethics committee members’ reported aims and practices and approaches towards efficiency, power, intimidation, justice, equality and children’s interests and rights. Different approaches (...) to framing ethical questions are also considered. Being aware of the four theories’ influence can help when seeking to understand and possibly change clinical ethics committee routines. The paper is not a research report but is informed by a recent study in two London paediatric cardiac units. Forty-five practitioners and related experts were interviewed, including eight members of ethics committees, about the work of informing, preparing and supporting families during the extended process of consent to children’s elective heart surgery. The mosaic of multidisciplinary teamwork is reported in a series of papers about each profession, including this one on bioethics and law and clinical ethics committees’ influence on clinical practice. The qualitative social research was funded by the British Heart Foundation, in order that more may be known about the perioperative views and needs of all concerned. Questions included how disputes can be avoided, how high ethical standards and respectful cooperation between staff and families can be encouraged, and how minors’ consent or refusal may be respected, with the support of clinical ethics committees. (shrink)

Background: The law and literature about children’s consent generally assume that patients aged under-18 cannot consent until around 12 years, and cannot refuse recommended surgery. Children deemed pre-competent do not have automatic rights to information or to protection from unwanted interventions. However, the observed practitioners tend to inform young children s, respect their consent or refusal, and help them to “want” to have the surgery. Refusal of heart transplantation by 6-year-olds is accepted. Research question: What are possible (...) reasons to explain the differences between theories and practices about the ages when children begin to be informed about elective heart surgery, and when their consent or refusal begins to be respected? Research design, participants and context: Research methods included reviews of related healthcare, law and ethics literature; observations and conversations with staff and families in two London hospitals; audio-recorded semi-structured interviews with a purposive sample of 45 healthcare professionals and related experts; interviews and a survey with parents and children aged 6- to 15-years having elective surgery (not reported in this paper); meetings with an interdisciplinary advisory group; thematic analysis of qualitative data and co-authorship of papers with participants. Ethical considerations: Approval was granted by four research ethics committees/authorities. All interviewees gave their informed written consent. Findings: Interviewees explained their views and experiences about children’s ages of competence to understand and consent or refuse, analysed by their differing emphases on informed, signified or voluntary consent. Discussion: Differing views about children’s competence to understand and consent are associated with emphases on consent as an intellectual, practical and/or emotional process. Conclusion: Greater respect for children’s practical signified, emotional voluntary and intellectual informed consent can increase respectful understanding of children’s consent. Nurses play a vital part in children's practitioner-patient relationships and physical care and therefore in all three elements of consent. (shrink)

Background This analysis is about practical living bioethics and how law, ethics and sociology understand and respect children’s consent to, or refusal of, elective heart surgery. Analysis of underlying theories and influences will contrast legalistic bioethics with living bioethics. In-depth philosophical analysis compares social science traditions of positivism, interpretivism, critical theory and functionalism and applies them to bioethics and childhood, to examine how living bioethics may be encouraged or discouraged. Illustrative examples are drawn from research interviews and observations (...) in two London paediatric cardiac units. This paper is one of a series on how the multidisciplinary cardiac team members all contribute to the complex mosaic of care when preparing and supporting families’ informed consent to surgery. Results The living bioethics of justice, care and respect for children and their consent depends on theories and practices, contexts and relationships. These can all be undermined by unseen influences: the history of adult-centric ethics; developmental psychology theories; legal and financial pressures that require consent to be defined as an adult contract; management systems and daily routines in healthcare that can intimidate families and staff; social inequalities. Mainstream theories in the clinical ethics literature markedly differ from the living bioethics in clinical practices. Conclusion We aim to contribute to raising standards of respectful paediatric bioethics and to showing the relevance of virtue and feminist ethics, childhood studies and children’s rights. (shrink)

Aggressive medical and surgical interventions have not been clearly demonstrated to improve survival in neonates with trisomy 18; there are no data that demonstrates improved quality of life for these children after these interventions; and these interventions are clearly associated with significant morbidity, resource allocation, and cost.

In lieu of an abstract, here is a brief excerpt of the content:Gaining a Heart But Missing MyselfLeilani R. GrahamI gathered it in my hands as it fell from my hair-brush, too saturated to hold anymore. It felt as if I were inside a movie and waiting for someone to yell “Cut!” but no call came. It continued to fall, feather-like onto the ground, individual strands glinting in the light of the bathroom window. My hair, nearly all of it, (...) was gone.Between the time of my heart transplant and the moment my hair began to fall out, I arguably had suffered enough. Transplant brought four open-heart surgeries, ten days on ECMO, an intra-aortic balloon pump, delirium, necrotizing pneumonia, and so much muscular atrophy that I had to re-learn how to walk. CPR, broken ribs, and the scar of a tricuspid clip from a botched biopsy: it was not the miracle I was hoping for.The internal trauma had certainly taken its toll. I no longer knew how I really felt, thanks to copious pain meds that altered my mind and body. Each limb was foreign as I re-acclimated to how one grabs hold of a cup, signs their name, touches their legs. Externally, I was a mess: covered in deep purple bruises across my torso from the diabetes treatments, dead skin pooling in unwashed pores, my ankles swollen and indiscernible from my legs. But lacking a good mirror (or the desire to find one), I still felt like “myself” during my forty-five day hospital stay. I could feel my cheekbones protruding from thinning skin, saw through unfocused eyes from the tempestuous blood sugars, and my hair sat in a rat’s nest atop my head; but I was still me.Arriving home, I felt like a newborn being brought into the real world for the first time. I needed help with everything—showers, sitting up, putting on shoes, even going to the bathroom. At age twenty-four, I felt I had regressed to the point of no return as I relied on others to do the simplest tasks. In addition, I was quarantined inside for three months, due to the risk of obtaining a fungal infection from the outside. Caged, and alone in my body, I a trapped and wounded tiger: angry, hurting, and scared. [End Page 109]When I had been prepared for transplant—and I use “prepared” loosely because the information packet I was handed was insulting at best—I knew to expect the scars. I had no issue with that, having been cut open at my throat and chest for previous surgeries. I knew to expect a 12-inch line from neck to navel: the most evident sign I would now carry that I was disabled.What I did not expect were the bullet holes— the sealed entrances of thick chest tubes that now dotted my lower torso. I did not anticipate the bruises on my arms and groin from arterial pokes. I felt violated as if I had walked into some kind of abduction and was rolled out, beaten, bruised, and, worst, touched.But it wasn’t the physical trauma that hurt the most. It was that no one seemed surprised.Immediately after transplant, the team’s focus is purely on survival. Survive the 30 days post-surgery. Survive the year. Metrics, uncomfortably tied to transplant center success statistics, funding, and clout have little to do with the patients themselves. What did I care to only survive a year? I wanted years. I wanted decades. It felt I wanted more than anyone was willing to pay attention to.The conversation was narrowed to high-risk issues: infection, rejection, or other life-threatening conditions. While this makes sense on a clinical level, what constitutes a major event for a clinician may not be of the same emotional value to the patient. In my case, I was less occupied by how the steroids were working and more obsessed with their side effects, such as how much weight I was rapidly gaining. I walked into the clinic one day with the beginnings of stretch marks and a week later had claw-like ripples down my sides. My mood swings were explosive... (shrink)

Coronary by-pass surgery has been performed in hundreds of thousands of patients in the last 15 years with a high standard of technical and surgical perfection. The indications for this kind of surgery, however, are still controversial because in spite of many retrospective and several prospective studies it cannot be proven convincingly that in a given patient this surgical procedure will prolong life or prevent myocardial infarction. The present attempt to analyze the causes for this controversy shows that (...) the main reasons for this uncertainty lie: (a) in the enigma of the underlying (ischemic heart) disease itself, which is supposed to lend itself to surgical therapy; (b) in the inadequate methods available up until now for characterizing the state of the disease, its probable course, and its pathogenesis; and (c) in the professional group interests which have a momentum of their own. (shrink)

Coronary by-pass surgery has been performed in hundreds of thousands of patients in the last 15 years with a high standard of technical and surgical perfection. The indications for this kind of surgery, however, are still controversial because in spite of many retrospective and several prospective studies it cannot be proven convincingly that in a given patient this surgical procedure will prolong life or prevent myocardial infarction. The present attempt to analyze the causes for this controversy shows that (...) the main reasons for this uncertainty lie: (a) in the enigma of the underlying (ischemic heart) disease itself, which is supposed to lend itself to surgical therapy; (b) in the inadequate methods available up until now for characterizing the state of the disease, its probable course, and its pathogenesis; and (c) in the professional group interests which have a momentum of their own. (shrink)

Medical professionals often deny patients who inject opioids a second or third heart valve replacement, even if such a surgery is medically indicated. However, such a position is not well defended. As this paper demonstrates, the ethical literature on the topic too often fails to develop and apply an ethical lens to analyse the issue of multiple valve replacements. This paper addresses this lacuna by analysing the case of Mr Walsh, a composite case which protects the identity of (...) any one patient, through the principlist approach of Beauchamp and Childress. It argues that the hospital should offer Mr Walsh, a second valve replacement because the procedure is: medically indicated, autonomously requested, non-maleficent, beneficent and does not violate a formal account of justice. The paper concludes with clinical ethical guidelines for valve surgery for patients with opioid use disorder. (shrink)

The Hearts and Minds of Ghana project travels from Boston Children’s Hospital for two weeks each year to provide cardiac surgery to children in Ghana. Of the hundreds of children in need, how to choose who will receive lifesaving surgery?

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)

A 24-year-old Hispanic male came into the emergency room of a large public teaching hospital with acute cardiac failure and chest pain. He was admitted and diagnosed with rheumatic heart disease and regurgitation and stenosis of both mitral and aortic valves. Medical judgment concluded that the patient needed to be medically stabilized and then undergo cardiac surgery to repair heart valves. The patient spoke only Spanish. Investigation through an interpreter revealed that he was an illegal alien from (...) a Central American country who has lived in this country for five to seven years. He came to the United States so that he could receive treatment for his heart condition, evidently fearing that he would not receive treatment in his home country. The patient entered this country through the assistance of some distant relatives. He did not have a strong support system. (shrink)

On July 2, 2001, a medical milestone was reached when Robert Tools received a total artificial heart implant at Jewish Hospital in Louisville, Kentucky. Tools was implanted with an AbioCor artificial heart, one of several brands of new-generation artificial hearts that has been approved by the U.S. Food and Drug Administration for clinical trial. The AbioCor heart was developed by Abiomed of Danvers, Massachusetts.Following the surgery, physicians were guardedly enthusiastic about the device and optimistic about the (...) patient’s future. Tools, 59, has had a history of numerous heart attacks and by-pass surgery, as well as diabetes and kidney problems. He met the requirements of the AbioCor protocol because he was not a candidate for transplant, death was otherwise probable within thirty days, and other interventions were deemed ineffective. Researchers hope that strengthening his heart function will result in increased function of his other vital organs, thus prolonging the patient's life and increasing his energy. But because the device is experimental, nothing can be promised. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Back to the Future:Obtaining Organs from Non-Heart-Beating CadaversRobert M. Arnold (bio) and Stuart J. Youngner (bio)Organ Transplantation requires viable donor organs. This simple fact has become the Achilles' heel of transplantation programs. Progress in immunology and transplant surgery has outstripped the supply of available organs. Between 1988 and 1991, for example, the number of transplant candidates on waiting lists increased by about 55 percent, while the number (...) of donors increased only about 16 percent.1 By the end of March 1993, more than 30,000 potential recipients awaited transplantation (United Network for Organ Sharing Database (UNOS) 1993). Every day six of these patients die prior to receiving a heart or liver transplant, while patients needing kidney transplants must tolerate a lower quality of life on dialysis (Grenvik 1992; Evans, Orians, and Ascher 1992).This scarcity is likely to get worse. As transplantation becomes more successful, it is being offered to sicker and older patients. Attempts to transplant other solid organs, such as small bowel and pancreas, will only fuel the demand for donors. However, the current source of organs is unlikely to grow. Most organs come from patients who have been declared dead by neurologic criteria (commonly referred to as "brain dead" or heart-beating cadaver donors (HBCDs) because their hearts are beating at the time of procurement). Estimates of the potential pool of HBCDs have been revised downward from 20,000-27,000 to roughly 10,000-12,000 (Nathan et al. 1991). Improvements in automobile safety and handgun legislation will likely lead to further reductions. Moreover, the rate of procurement from HBCDs has remained relatively flat despite extensive public awareness campaigns and legislation requiring hospitals to routinely request donation from families of dead patients (Caplan et al. 1992).If organ transplantation is going to continue to flourish, alternative [End Page 103] sources of organs must be found. Recently the University of Pittsburgh Medical Center (UPMC) proposed procuring organs from patients who have been declared dead by traditional cardiopulmonary rather than brain-oriented criteria after they or their families have decided to forgo life-sustaining treatment—hereafter referred to as the Pittsburgh protocol (UPMC Policy 1993). These patients are typically referred to as non-heart-beating cadaver donors (NHBCDs) because their hearts are no longer beating at the time of organ procurement.Although NHBCDs were a major source of transplantable kidneys prior to the institution of death by neurologic criteria, their usefulness was limited by "warm ischemia time." This term refers to the injury to tissues that occurs when the blood supply is interrupted and before the organs are cooled and reperfused. Under the Pittsburgh protocol, therapy is withdrawn in the operating room where a waiting surgical team removes organs immediately after death is declared. By controlling the place and time of death, it has been possible to minimize warm ischemia time and thus solve the technical problems previously associated with procurement from NHBCDs.The potential contribution of NHBCD organs is significant. Nathan (1992), using data from Delaware Valley Transplant Program, concludes that the use of severely brain injured, but not "brain dead" patients, would increase the donor pool by 20-25 percent. Moreover, unpublished data from the Pittsburgh organ procurement organization, the Center for Organ Recovery and Education (CORE), suggests that these organs, particularly kidneys, function as well as those procured from HBCDs (Broznick 1993).This volume is devoted to the ethical, psychosocial, and public policy implications of procuring organs from non-heart-beating cadaver donors after a discussion to forgo life-sustaining treatment. The genesis of this volume was a project in which we invited leading experts in transplantation, ethics, and public policy to use the Pittsburgh protocol as a starting point for exploring a broad range of issues associated with attempts to procure organs from NHBCDs. The issues raised by NHBCDs turned out to have important implications about the fundamental conceptual and moral assumptions underlying organ procurement.Although each of the papers in this volume can be read separately, we intend the volume to be read as a whole. Many of the latter pieces on the ethical implications of the policy are best understood in light of the earlier background papers... (shrink)

The paper describes how ethics consultation can be valuable to health professionals, patients and their families in understanding and evaluating ethical values and their consequences in a particular situation. Ethics consultation as it is practised at the university hospital of Freiburg is a special professional service offered by members of an academic institution.The practical approach and the goals are illustrated by a case study showing the difficulties of deciding about the limitation of intensive care medicine after heart surgery (...) in the setting of maximum treatment. Here, the ethics consultation was initiated by the relatives of the patient who wanted a decision to withhold further life-sustaining treatment.Following the experiences in Freiburg, it is concluded that clinical ethicists have to cover a variety of relevant fields of knowledge, need special analytical skills, and should have professional competence in counselling, including conflict mediation or crisis intervention. (shrink)

IntroductionWhen professional nurses face an obstacle in their perfect purposes, they would experience moral distress which is a suffering situation. This study aims at exploring conditions which lead to high levels of moral distress for nursing personnel within a teaching hospital in Iran.MethodsAll nursing staffs worked in ICU, CCU, open heart surgery and emergency ward of a teaching hospital in Mashhad, Iran, were evaluated in a descriptive study by translated and modified moral distress questionnaire of Corley.ResultsAccording to the (...) participants, the mean age and work experience were 34.15 ± 4.17 and 10.77 ± 4.06, respectively. Almost 91.5% of nurses had a bachelor degree, and 51.1% of them were female. The most amount of moral distress was identified in contribution to physicians who have not enough skills, disregarding patients' right, and the inability for providing drugs.DiscussionPost-CCU and assistant nurses, especially female individuals had higher scores of moral distress compare with others... (shrink)

When should doctors seek protective custody to override a parent’s refusal of potentially lifesaving treatment for their child? The answer to this question seemingly has different answers for different subspecialties of pediatrics. This paper specifically looks at different thresholds for physicians overriding parental refusals of life-sustaining treatment between neonatology, cardiology, and oncology. The threshold for mandating treatment of premature babies seems to be a survival rate of 25–50%. This is not the case when the treatment in question is open (...) class='Hi'>heart surgery for a child with congenital heart disease. Most cardiologists would not pursue legal action when parents refuse treatment, unless the anticipated survival rate after surgery is above 90%. In pediatric oncology, there are case reports of physicians requesting and obtaining protective custody for cancer treatment when the reported mortality rates are 40–50%. Such differences might be attributed to differences in care, a reasonable prioritization of quality of life over survival, or the role uncertainty plays on prognoses, especially for the extremely young. Nonetheless, other, non-medical factors may have a significant effect on inconsistencies in care across these pediatric subspecialties and require further examinations. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Editors’ NoteJames M. DuBois, Ana S. Iltis, and Heidi A. WalshFrom childhood, David Slakter had undergone tests and invasive procedures to monitor his nephritis. It was not a surprise when in 2015, doctors told him he needed a kidney transplant. The wife of a childhood friend was a close match and gave him one of her kidneys. Before his transplant, aerobic exercise was difficult; a few months after transplant, (...) Slakter could ride his bike, hike, and work out with a personal trainer. He no longer had to weigh food or gauge his potassium consumption, a concern for people with kidney failure. For Slakter, “life post-transplant has been a significant improvement.”Individuals or family members of those who have received an organ transplant from a living or deceased donor share their stories in this issue of Narrative Inquiry in Bioethics. The symposium is titled “Receiving the Gift of Life: Stories from Organ Transplant Recipients.” Organ transplantation can extend an individual’s life by decades. It can also greatly improve an individual’s quality of life, as was Slakter’s experience. At the same time, organ transplantation is expensive and stressful. Recipients can experience complications, including organ rejection, and there are few appealing alternatives.After her heart transplant, author Leilani R. Graham required four open-heart surgeries, ECMO, and an intra-aortic balloon pump. She experienced delirium, necrotizing pneumonia, and severe muscular atrophy that required her to re-learn how to walk. She struggled with weight gain, explosive mood swings, hair loss, and was terrified that her body would reject the new heart. For Graham, “[Transplant] was not the miracle [she] was hoping for.” Graham says she felt unprepared for and inadequately informed about what to expect after her transplant, which left her “battered, beaten, and bruised” with a 12-inch line from neck to navel and “bullet holes” up and down her torso from the chest tubes. When reflecting on her experience post-transplant, Graham says, “It wasn’t the physical trauma that hurt the most. It was that no one seemed surprised [by the aftereffects of transplant].” Seemingly no one, that is except Graham, who calls on transplant providers to “prioritize empathy.”The symposium editors are Jason T. Eberl and Tristan McIntosh. Three commentary articles, written by Macey Leigh Levan, Heather Lannon, and Vidya A. Fleetwood, Roslyn B. Mannon & Krista L. Lentine, offer important insights into the authors’ stories. The editors thank Mid-America Transplant, the UCSF Lung Transplant Program, Donor Connect, William L. Freeman, MD, MPH, MJIL, CIP, Janet Monk, and the individuals who gave anonymous donations to support the publication of this issue, an open-access VOICES edition of the symposium, and accompanying teaching guides.The research article in this issue, “‘A Shell of My Former Self’: Using Figurative Language to Promote Communication about Patient Suffering,” was written by Tyler Tate, Elizabeth Stein, and Robert A. Pearlman. The relief of suffering is a primary goal of medicine. However, the authors note that clinicians often miss or ignore suffering because they focus on the causes rather than the experience of suffering, or the subjective nature of suffering makes it difficult to discuss. The authors believe that “the key to communicating about suffering lies in finding [End Page vii] the right kind of words to describe the experience” and say that figurative language offers a promising approach. In their research, the authors performed qualitative analysis on 52 works of literature and identified 254 excerpts of figurative language with themes of non-physical or psychological suffering. The authors found 13 salient themes: brokenness, diminishment, disorientation, drowning, emptiness, imprisonment, battle, darkness, isolation, invisibility, lifelessness, punishment, and torture. The authors reiterate that developing a shared language of suffering could foster a therapeutic patient-clinician relationship and improve clinicians’ ability to recognize and address a patient’s experience of suffering.María Susana Ciruzzi wrote the first of two case studies included in this issue. “The Sword of King Solomon” addresses a tragic and difficult subject—how to navigate the situation posed by conjoined twins when “any decision will produce damage and suffering.” The case involves two infant male patients born at 37 weeks gestation as omphalo-ischiopagus conjoined twins... (shrink)

We live in the era of Facebook, Fitbit, and Skype. As such, it would be unreasonable to expect that the healthcare industry would not see the same kind of globalization as do our social spheres and consumer activities. Indeed, the explosion of information technology, the ease of transcontinental travel, and the emergence of a more globally aware citizenry allows for scientific collaboration that has had many positive effects on global health. However, the economic and structural disparities between systems of healthcare (...) delivery in the industrialized world and parts of the developing world have created a monster in the form of an international medical tourism industry that endangers the health and safety of citizens of the host country as well as visiting patients. Not only does the practice of medical tourism pose a practical danger to those in direct contact with the industry, but it brings up troubling philosophical problems centering on national responsibility and the commodification of healthcare, among other important issues. In the United States, the driving force behind international medical tourism is the exorbitant cost of healthcare, particularly for the uninsured but also for the underinsured and those who experience catastrophic medical expenses from chronic illness or sudden health crises. Not only have individuals begun to look outside the U.S. for surgical procedures and other expensive therapies, but employers have begun to toy with the idea of outsourcing the medical care of the employees they insure in order to cut costs. In other industrialized nations, the issues that underpin international medical tourism are related to healthcare rationing and reflect different shortcomings in the delivery of healthcare in those nations, such as the United Kingdom and Canada, that have single-payer systems. Yet the regulatory and philosophical implications for both patients and hosts of international healthcare are largely the same. The challenge of regulating international trade in medical care is obvious and becomes particularly acute when there are insurers and employers involved. Complicating matters further, medical care that takes place outside the country of origin of the patient is often brokered by “medical concierge services,” which, though quick to claim indemnity from any harm arising from substandard or inappropriate medical care, cannot be divorced from responsibility for the health outcomes of their clients. Agreements hashed out between concierge services and patients specify that any remedy for harm stemming from their medical care must be pursued within the confines of the law of the host country, but the practical implications of this are troublesome. How can a foreign patient—often without either linguistic or cultural competency in the host country—be expected to navigate the complexity of a foreign legal system, particularly one that may be far less developed than his home country? Furthermore, if insurance companies and employers are involved with such care, who pays for an adverse result or determines responsibility for harm that may befall the patient? Under which countries’ laws? If a patient travels to Singapore for sexual reassignment surgery or a cardiac valve repair, returns to the States and suffers complications, who pays for the restoration of her health? Beyond legal standards and judicial remedies for harm to patients seeking care on the international market, there is the question of what ethical standards and norms apply to such patients. What effect does it have on American patients, for example, to receive care within a system that does not emphasize autonomy and informed consent the way they are used to? Why should foreign physicians care about the cultural mores of their patients’ country of origin? Can they be expected to grasp cultural differences between American, Canadian, and British patients? The medical concierge might respond, “Well, buyer beware!” This is unreasonable: It is nearly impossible for any patient to accurately assess the various options, risks and benefits that go with a particular medical treatment, much less the patient who is attempting to do so on the international market. And the crass invocation of the doctrine of caveat emptor betrays a view of healthcare as a commodity that is naive and inappropriate. Paramount in my mind, however, are the practical implications for the care of the citizens of developing nations that host international patients and the broader philosophical issue of what the goals of the medical profession as a whole and each country’s individual healthcare system should be. While I understand the argument that international medical tourism creates great economic gains for developing nations, which can then be channeled toward the care of their citizenry as a whole, there is much reason to doubt that this “trickle-down” model of economics provides real benefits for underserved, whether in healthcare or other arenas. What is more likely is that, while lucrative international “medi-cities” may keep bright doctors in their home countries, it is also likely to lure them away from the institutions that serve the lion’s share of their countrymen. With the concentration of talented native doctors in private hospitals that serve citizens of the developed world, the population at large is left to obtain care at institutions that suffer “brain drain” from the flight of talented local staff to more prestigious, often “brand name,” institutions that give them more Western-like salaries while allowing them to practice in their countries of origin. The very fact that citizens of the wealthiest nations in the world are forced to go abroad for life-saving care speaks to an abdication of national responsibility on the part of their home countries. The provision of health care is one of the principal responsibilities of any nation and it is unacceptable that a nation with the strength and wealth of the United States would take advantage of the weaker political and economic situations of developing nations in order to shirk its responsibility to its fellow citizens. If we take care of our countrymen and take pride in an equitable system of healthcare delivery, there will be no need to shrug our shoulders and say “Buyer beware” to the patient who heads to the Philippines for heart surgery. (shrink)

The Term 'Practical Progress' in Biomedical Sciences. A Structuralistic Approach to the Reconstruction of Epistemological Terms in Medicine. An attempt is made to elucidate the structure of the term 'practical progress' and to reconstruct it logically. The importance of discovery and confirmation of new regularities as well as of practical rules arising from them depends on their contribution to the solution of practical problems. The application of this structuralistic definition of 'practical progress' is demonstrated with an example from cardiac (...) class='Hi'>surgery concerning the solution of the practical medical problem of myocardial protection during open heart surgery. (shrink)

The Term 'Practical Progress' in Biomedical Sciences. A Structuralistic Approach to the Reconstruction of Epistemological Terms in Medicine. An attempt is made to elucidate the structure of the term 'practical progress' and to reconstruct it logically. The importance of discovery and confirmation of new regularities as well as of practical rules arising from them depends on their contribution to the solution of practical problems. The application of this structuralistic definition of 'practical progress' is demonstrated with an example from cardiac (...) class='Hi'>surgery concerning the solution of the practical medical problem of myocardial protection during open heart surgery. (shrink)

Parents of children who died following complex heart surgery have recently discovered that organs were removed and retained in post-m.

... and the baby has a large VSD. Otherwise appears well, gaining weight, smiling. No apnea, never been on ventilator. Local cardiac surgeon refused to operate, saying that surgery would be inappropriate. Have reached out to other centers, and some state that they never perform what they said was “futile” heart surgery on children with Trisomy 18, while other sites say they have and will continue to perform these operations. Can someone explain to me what is going (...) on? In the realm of medical care—given enough patients, clinicians, and time—conflict is inevitable. Someone will want to do something, such as give a drug or start a new form of technologic support, and someone else will think that this is a... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:It’s a Human Rights Issue!Daniela TrufferI was born in 1965 in Switzerland with a severe heart defect and ambiguous genitalia. The doctors couldn‘t tell if I was a girl or a boy. First they diagnosed me with CAH and an enlarged clitoris, and cut me between my legs looking for a vagina.Because of my heart condition, the doctors assumed I would die soon. After an emergency baptism, (...) I stayed in the hospital for three months. My mother would travel to the city as often as possible, though she was only allowed to see me through a glass window.When I was two months old, and still in the hospital, doctors opened my abdomen and found healthy testes, which they threw in the garbage bin. According to my medical records, my parents had not provided consent. Further tests showed I am chromosomally male.Later the “castration” was declared a “mistake”: one doctor said I was a boy with hypospadias. As they had already removed the testes, however, they would have “to continue this way and the small patient must be made a girl.”After three months, my parents were finally allowed to take me home.During my childhood, I spent a lot of time in doctor’s offices and hospitals, suffering countless examinations of my genitals and urethral opening. When I was two, our family doctor stuck his finger into my urethral opening; I was screaming very loud, my father says. My mother had to put me into warm water because every time I had to pee I screamed in pain. Later I was hurried to the hospital with a bad infection. Still today my urethra often hurts after going to the toilet.I knew early in my life that I was different.I learned fragments of the truth only after decades of ignorance and denial. I was lucky to obtain my medical records. The hospital initially told me they no longer existed. When I insisted, they eventually sent me some recent files pertaining only to care I received after I was an adult. I kept calling. Once I was put through directly to the archive, where I was told that indeed there were “lots of files on microfilm.” However, it was only when I threatened to return with a lawyer that the hospital sent me a large pile of printouts.Finally I had it in black and white: The doctors had systematically lied to my parents, instructing them to “raise me as a girl” and never talk to me or to anyone else about “the gender issue.” Asked if I could have children, the doctors told them it was “doubtful.” At seven, the doctors still claimed it had been necessary to “remove the ovaries,” and at fourteen told me that I didn‘t menstruate because my “uterus was very small.”Because of the castration, my bone growth was reduced. To this day, I have to deal with health problems like a ruined metabolism, recurring fatigue and vertigo, and osteopenia.I would eventually grow older than doctors had originally predicted. At seven, they decided to operate on my heart septum and valve. I went to the hospital for preparatory cardiac catheterization. However, because of an infection, doctors put off the procedure. Since I had already been admitted, they decided to “use the opportunity to conduct the genital correction already planned in 1965,” and shortened my micropenis to the size of a “very small clitoris,” allegedly with my consent.Fortunately they didn‘t amputate the glans, and I still have sexual feelings left. But I remember the pain and unease, and how I often ran home from [End Page 111] school crying. Today I have a lot of scar tissue, which often hurts and itches.After a few days I was brought back to the cardiologist for the catheterization, and a few months later heart surgery. The doctors saved my life and destroyed it in the same year.I spent my childhood in fear, isolation, and shame. When I had to see a doctor, I was always scared stiff, but I never cried, and endured everything without any protest. I felt sick days in advance, and in... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Medical Tourism:Crossing Borders to Access Health CareHarriet Hutson Gray (bio) and Susan Cartier Poland (bio)Traveling abroad for one's health has a long history for the upper social classes who sought spas, mineral baths, innovative therapies, and the fair climate of the Mediterranean as destinations to improve their health. The newest trend in the first decade of the twenty-first century has the middle class traveling from developed countries to those (...) with emerging economies to avoid treatment delays, prohibitive costs for life-saving procedures, or simply high costs for elective surgery. Others leave to have access to assisted suicide in countries that have legalized it: Belgium, The Netherlands, and Switzerland. This new era of globalization in health care has arrived without the benefit of international standards, government oversight, or ethical and legal review.Howard Staab, a self-employed carpenter from North Carolina, flew to India for his medically necessary heart surgery, scheduled a side trip to the Taj Mahal, and returned home to work in North Carolina. He spent a total of less than $10,000, instead of the $200,000 required from the local hospital (I, Milstein and Smith 2006).At first blush, the outsourcing of medical care to India seems to be a particular solution for a particular problem. However, the particularity of Mr. Staab is not unique. His experience is emblematic of those patients in the United States with a medical need for major and elective procedures, but who also must bear the total cost of these procedures. These middle-class, under-insured Americans go abroad.In tandem with increasingly aggressive marketing campaigns, American hospitals and companies have begun to leverage their connections in Asia to grow the medical tourism business into a major economic force. What are the consequences of this?Several authors point to the effect on the host country's population, particularly the poor, to be pushed farther down the queue to receive adequate, affordable care. Resources are applied to the foreign trade instead of building the local [End Page 193] medical infrastructure. Another potential problem is the obligation of the home-country physician to provide follow-up care. What are the legal ramifications when the procedure was illegal to begin with? Are there opportunities for redress for medical errors?These factors may be converging into a "perfect storm" for health care in the U.S., in which the potential participation of the major insurance companies in promoting offshore care will be the tipping point in the precarious structure that represents the economic currents in health care. Third-party administrators and self-funded employers may be on the cutting edge in 2009 by providing incentives to employees to travel overseas for care.I. Economic ConsiderationsConnell, John. Medical Tourism: Sea, Sun, Sand and... Surgery. Tourism Management 27: 1093–1100, 2006.As evidence of the interest of traditional tour operators in this newer twist on the industry, the author explores medical tourism as an element of the growth of world tourism. In promoting medical tourism, he urges consideration of such issues as the privatization of health care, the foundational role of technology, and uneven access to health resources.Dunn, Philip. Medical Tourism Takes Flight. H and HN: Hospitals and Health Networks: 40–44, November 2007.Writing for U.S. health care executives, Dunn emphasizes that the reality of medical tourism competes with the local medical center for patients and their insurance dollars in a significant way. He examines the possibility that U.S. insurance plans soon may offer to pay for what is currently a cash only business and that the economic impact to the local medical center could be significant or even devastating.Frontiers of Health Services Management [Selected Articles] 24 (2), Winter 2007.In "Managing Healthcare Services in the Global Marketplace" (pp. 3–18), Bruce J. Fried and Dean M. Harris consider legal, ethical, and financial implications of the international workforce. In "Globalization of Health Care" (pp. 19–30), Lynn Schroth and Ruthy Khawahja point out that the transfer of comprehensive management expertise and intellectual property from U.S. medical centers to international sites is driving the success of collaboration between U.S. and foreign health care centers. In "Is... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Journal of the History of Ideas 65.1 (2004) 155-157 [Access article in PDF] In Memoriam John F. Callahan John Francis Callahan, Professor Emeritus of Philosophy and Classics at Georgetown University, died 14 July 2003 after open-heart surgery performed 6 June and was buried with full military honors 17 September at Arlington National Cemetery. His funeral Mass at the Old Post Chapel was concelebrated by his old friend (...) and former colleague, Father Edward W. Bodnar, S.J., who had also concelebrated a memorial Mass in the Jesuit Chapel at Georgetown 5 August.John served on the Board of Editors and the Board of Directors of the Journal of the History of Ideas from 1970 until his death and was Vice-President from 1985. Throughout thirty-three years, during which he never missed a meeting until the last, he devoted unstinted time and energy to the affairs of the Journal, rigorously scrutinizing every problem, from matters of editorial policy through changes in leadership, location, and membership on the Editorial Board to proposals for expenditures and questions of format and style. He was a meticulous reader of manuscripts and applied the most stringent standards to his consideration of both content and modes of expression. No mistake in Greek typography escaped his vigilance. He brought to the annual meetings a distinctive elegance and an unusual sense of collegiality that derived both from his devotion to the Journal itself and from his long friendship with some of the older members of the Board, such as Paul Kristeller and Richard McKeon.John was a life member of the American Philological Association (since 1940) and served with distinction from 1976 to 1986 as its delegate to the International Federation of Classical Studies (FIEC), attending its meetings in Budapest and Helsinki. A scholar of exceptionally wide-ranging interests, he was best known for his studies of the concept of time in ancient philosophy and his critical edition of Gregory of Nyssa, De oratione dominica et De beatitudinibus, which he completed at Dumbarton Oaks after he retired from Georgetown.Born in Chicago 13 May 1912, he began the study of Greek and Latin at St. Ignatius Prep, where he was also introduced to opera, a lifelong passion, by one of his Jesuit teachers. He received the A.B. in 1933 and the A.M. in 1934 from Loyola University, Chicago, which on Founder's Day, 1965, honored him with an award for distinguished contributions to classical scholarship. He received the Ph.D. in 1940 from the University of Chicago, where he studied with Richard McKeon and Werner Jaeger, the two principal, very different influences on his approach to philosophy and philology. Henry Prescott and Carl Darling Buck were two other members of that fabulous generation of classical scholars at Chicago who made a lasting impression on him. His interest in Plautus, Greek and Roman linguistics, and comparative grammar continued throughout his life, contributing to what a former colleague at Dumbarton Oaks has described as an uncanny ability to penetrate beneath the surface of the classical languages, to "peer into their deep structure."John was a Teaching Fellow at the University of Chicago, 1936-37, Instructor at Loyola University, 1937-40, Visiting Instructor, Harvard University, 1940-41, Assistant Professor, Loyola University, 1941-43, Associate Professor and Professor of Classics and Philosophy, Georgetown University, from 1946 until he retired in 1978, and Project Director at Dumbarton Oaks, Harvard University, 1977-86. He served in the United States Navy from 1943 to 1946, working in Naval Communications. He rarely [End Page 155] spoke of his part in breaking the Japanese code, but often referred to such comrades in arms as Sam Atkins and Richmond Lattimore, who like him returned to teaching as soon as World War II was over.John's teaching was enriched by his research, which was supported by a notable succession of fellowships, from the Rockefeller Foundation in 1947, the Ford Foundation for the Advancement of Education, 1953-54, the Fulbright Commission, 1953-55, the Guggenheim Foundation, 1958-59, and the National Endowment for the Humanities, 1967. He... (shrink)

Children's autonomy includes, as far as possible, self-determination, bodily integrity and the right to influence outcomes. Limits to bodily integrity, which involves no touching without the child's consent or tacit agreement, are discussed. The clinical, legal and ethics literature tends to agree that children may give valid consent to major recommended treatment from around 12 years but may not refuse it until they are legal adults. Research shows that young children are more aware of their bodily integrity and autonomy, of (...) morality and decision making, than was assumed in the past. Adults therefore need to inform children and respect their initially instinctive efforts to protect their bodily integrity. Unlike assent, consent involves patients being adequately informed and being able to accept or refuse proposed treatment. Reasons are given for adults’ need to consult with children when determining their best interests. Beyond words, giving or withholding consent also involves emotions of fear, trust and courage, besides embodied reactions of cooperating with treatment or resisting it, in which young children actively engage. Some clinicians work with the informed cooperation of young children who need lifesaving treatment, and at times accept their refusal. Reasons for differences between mainstream experts’ views and clinical practices are considered. (shrink)

Rambam Medical Center, the only tertiary care center and largest hospital in northern Israel, was subjected to continuous rocket attacks in 2006. This extreme situation posed serious and unprecedented ethical dilemmas to the hospital management. An ambiguous situation arose that required routine patient care in a tertiary modern hospital together with implementation of emergency measures while under direct fire. The physicians responsible for hospital management at that time share some of the moral dilemmas faced, the policy they chose to follow, (...) and offer a retrospective critical reflection in this paper. The hospital’s first priority was defined as delivery of emergency surgical and medical services to the wounded from the battlefields and home front, while concomitantly providing the civilian population with all elective medical and surgical services. The need for acute medical service was even more apparent as the situation of conflict led to closure of many ambulatory clinics, while urgent or planned medical care such as open heart surgery and chemotherapy continued. The hospital management took actions to minimize risks to patients, staff, and visitors during the ongoing attacks. Wards were relocated to unused underground spaces and corridors. However due to the shortage of shielded spaces, not all wards and patients could be relocated to safer areas. Modern warfare will most likely continue to involve civilian populations and institutes, blurring the division between peaceful high-tech medicine and the rough battlefront. Hospitals in high war-risk areas must be prepared to function and deliver treatment while under fire or facing similar threats. (shrink)

Yearly pediatric cardiac surgery missions to Ghana are of tremendous benefit to local children, but may create thorny ethical dilemmas for local clinicians who refer and screen children for the mission and who provide care to the children after the mission concludes for the year. This article presents the experiences and concerns of a pediatrician who is a local member of the Hearts and Minds of Ghana project.

Facelifts, tummy tucks and breast enlargements are no longer the privilege of the rich and the famous. Any woman can have all these and many more cosmetic surgical treatments, and an increasing number of women do. Are they having cosmetic surgery because they are duped by a male-dominated beauty system, or do they genuinely choose these operations themselves? Feminists give diametrically opposed answers to this question. At the heart of the controversy, or so I claim in this article, (...) lies a conceptual problem about free choice; therefore, the only thing that can settle it is a conceptual analysis of “freedom”. After having briefly outlined the views of both sides of the debate, I offer such an analysis. (shrink)

Although it is commonly believed that the concept of brain death was developed to benefit organ transplants, it evolved independently. Transplantation owed its development to advances in surgery and immunosuppressive treatment; BD owed its origin to the development of intensive care. The first autotransplant was achieved in the early 1900s, when studies of increased intracranial pressure causing respiratory arrest with preserved heartbeat were reported. Between 1902 and 1950, the BD concept was supported by the discovery of EEG, Crile’s definition (...) of death, the use of EEG to demonstrate abolition of brain potentials after ischaemia, and Crafoord’s statement that death was due to cessation of blood flow. Transplantation saw the first xenotransplant in humans and the first unsuccessful kidney transplant from a cadaver. In the 1950s, circulatory arrest in coma was identified by angiography, and the death of the nervous system and coma dépassé were described. Murray performed the first successful kidney transplant. In the 1960s, the BD concept and organ transplants were instantly linked when the first kidney transplant using a brain-dead donor was performed; Schwab proposed to use EEG in BD; the Harvard Committee report and the Sydney Declaration appeared; the first successful kidney, lung and pancreas transplants using cadaveric donors were achieved; Barnard performed the first human heart transplant. This historical review demonstrates that the BD concept and organ transplantation arose separately and advanced in parallel, and only began to progress together in the late 1960s. Therefore, the BD concept did not evolve to benefit transplantation. (shrink)

The scenario could not have been more grim. Mrs. Carr had been fitted with a breathing tube for surgery, but the doctors were unable to wean her from the ventilator due to recurrent episodes of life‐threatening infection. She could not eat because of the ventilator, so she received nutrition through a tube in her stomach. At some point, her kidneys shut down and she started dialysis treatments. Between recurrent infection and dialysis, her blood pressure bottomed out, and the medical (...) team frequently jump‐started her heart with intravenous adrenaline‐type medications. Without aggressive support of her lungs, kidneys, nutrition, and cardiovascular system, Mrs. Carr would be dead. “What is going on here?” Anna wondered aloud. “Is this life?” Philosopher and physician Jeffrey Bishop might argue that this is not life. Rather, medicine has created a body in perpetual motion. Contemporary medicine, he contends, has redefined human life as human function; doctors simply replace the broken or dead parts of the human machine with other machines—a ventilator for the lungs, dialysis for the kidneys, and so forth—and the body stays in motion indefinitely. Bishop argues that the discipline of medicine needs to reexamine its metaphysical assumptions—its current approach is detrimental to human flourishing. Should a metaphysics of efficient causation be replaced with a more expansive metaphysics of final causes? (shrink)

Abstract:This symposium includes thirteen personal narratives from people who have received at least one organ transplant from a living or deceased donor. These narratives foster better understanding of the experiences of life-saving organ recipients and their families, including post-transplant difficulties experienced—sometimes requiring multiple transplants. This issue also includes three commentaries by Macey L. Levan, Heather Lannon, and Vidya Fleetwood, Roslyn B. Mannon & Krista L. Lentine. Dr. Levan is a living kidney donor and associate professor of surgery and population (...) health. She writes and teaches on organ transplant and has expertise and experience in governance at the federal level as a member of the board of directors for the U.S. Organ Procurement and Transplantation Network. Dr. Lannon is a social worker and transplant advocate. Her work and interest in the topic were inspired by her husband who needed a heart transplant. Dr. Fleetwood is a surgeon specializing in liver transplantation, pancreas transplantation, kidney transplantation, as well as living donor nephrectomy. Dr. Mannon is a nephrologist and professor of medicine, pathology and microbiology. Her work focuses on understanding and improving long-term kidney transplant outcomes for patients, donors, and caregivers. Dr. Lentine is a nephrologist specializing in treatment of adult patients with kidney disease. She is a researcher and co-chaired the international work group that developed guidelines for living donor kidney transplantation. (shrink)

continent. 1.3 (2011): 148. With this third issue of continent. we welcome you to join a conversation. The announced thematic for this issue, autonomy, evolved out of an interest to understand the contours of our being together, not necessarily those qualities or conditions that point towardsisolation. This summer brought some significant events and comminglings for our team: we sponsored a symposium, with Christian Hänggi at the historic Cabaret Voltaire in Zürich; we welcomed several new talented folks into our budding organisation; (...) and our dear Nico had major back surgery. Fortunately, Nico is recovering nicely, and new memberships allow us to emphasize significant contributions made by to issue 1.3 by our new friends Isaac Linder, Nina Jäger, Peggy Bloomer, and Ryland Johnson. Without their efforts this issue would not be available, as our publication is created and sustained through the good will and good fun of our Contributing Editors. We see continent. as an opportunity to bring our favorite people and projects together and thus this issue features conversations, between authors, between times, between topics. You are warmly welcomed to join these conversations and we encourage you to call in those topics, projects, and people close to your own heart, close to your own mind. Paul, Jamie, & Nico. (shrink)

Von Clausewitz thought that war is just the continuation of politics by other means. I hold that it’s exactly the reverse. But if all political categories are reducible, without remainder, to military ones, to what are considerations of distributive justice reducible? Tribute? Precisely! But is it helpful to view issues of distributive justice this way? I argue that it is. The folk-vocabulary acquiesced to by traditional political philosophy may swell our hearts. But it leaves political counsel decidedly undecidable, and it (...) renders us vulnerable to exploitations against which military vocabulary offers us much better protection. This reduction is, I concede, more than a tad disgusting. But so is most life-saving surgery! (shrink)