There is a growing trend of refusal of blood transfusions from COVID-19 vaccinated donors. We highlight three cases where parents have refused blood transfusions from COVID-19 vaccinated donors on behalf of their children in the setting of congenital cardiac surgery. These families have also requested accommodations such as explicit identification of blood from COVID-19 vaccinated donors, directed donation from a COVID19 unvaccinated family member, or use of a non-standard blood supplier. We address the ethical challenges posed by these (...) issues. We describe the current screening and safety processes for standard blood donation and explore the importance of donor anonymity and challenges with directed donation and non-standard blood suppliers. We present an ethical framework using the Best Interest Standard, the Zone of Parental Discretion, and the Harm Principle when considering these refusals. Finally, we provide recommendations for how to approach these requests as they potentially become more commonplace in pediatrics. (shrink)

There is a growing trend of refusal of blood transfusions from COVID-19 vaccinated donors. We highlight three cases where parents have refused blood transfusions from COVID-19 vaccinated donors on behalf of their children in the setting of congenital cardiac surgery. These families have also requested accommodations such as explicit identification of blood from COVID-19 vaccinated donors, directed donation from a COVID-19 unvaccinated family member, or use of a non-standard blood supplier. We address the ethical challenges posed by these (...) issues. We describe the current screening and safety processes for standard blood donation and explore the importance of donor anonymity and challenges with directed donation and non-standard blood suppliers. We present an ethical framework using the Best Interest Standard, the Zone of Parental Discretion, and the Harm Principle when considering these refusals. Finally, we provide recommendations for how to approach these requests as they potentially become more commonplace in pediatrics. (shrink)

Objectives: The aim of this study was to examine priority setting for coronary artery bypass surgery, and to provide an overview of decisions and rationales used in clinical practice.Method: Questionnaires were sent to all permanently employed cardiologists, cardiothoracic surgeons, and anaesthesiologists at nine Swedish hospitals performing adult cardiothoracic surgery.Results: A total of 208 physicians responded . There was considerable agreement concerning the criteria that should be used to set priorities for coronary artery bypass interventions . However, there was (...) a lack of accord regarding the use of national guidelines for priority setting and risk indexes.Conclusions: Basic training and the strong support of ethical principles in priority setting are lacking. The respondents indicated a need for clearer guidelines and an open dialogue or discussion. The lack of generally acknowledged plans and guidelines for priority setting may result in unequal, conditional, and unfair treatment. (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?

Objective To assess parental permission for a neonate's research participation using the MacArthur competence assessment tool for clinical research (MacCAT-CR), specifically testing the components of understanding, appreciation, reasoning and choice. Study Design Quantitative interviews using study-specific MacCAT-CR tools. Hypothesis Parents of critically ill newborns would produce comparable MacCAT-CR scores to healthy adult controls despite the emotional stress of an infant with critical heart disease or the urgency of surgery. Parents of infants diagnosed prenatally would have higher MacCAT-CR scores than (...) parents of infants diagnosed postnatally. There would be no difference in MacCAT-CR scores between parents with respect to gender or whether they did or did not permit research participation. Participants Parents of neonates undergoing cardiac surgery who had made decisions about research participation before their neonate's surgery. Methods The MacCAT-CR. Results 35 parents (18 mothers; 17 fathers) of 24 neonates completed 55 interviews for one or more of three studies. Total scores: magnetic resonance imaging (mean 36.6, SD 7.71), genetics (mean 38.8, SD 3.44), heart rate variability (mean 37.7, SD 3.30). Parents generally scored higher than published subject populations and were comparable to published control populations with some exceptions. Conclusions The MacCAT-CR can be used to assess parental permission for neonatal research participation. Despite the stress of a critically ill neonate requiring surgery, parents were able to understand study-specific information and make informed decisions to permit their neonate's participation. (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)

This paper examines the ethical aspects of organ transplant surgery in which a donor heart is transplanted from a first recipient, following determination of death by neurologic criteria, to a second recipient. Retransplantation in this sense differs from that in which one recipient undergoes repeat heart transplantation of a newly donated organ, and is thus referred to here as “reuse cardiac organ transplantation.” Medical, legal, and ethical analysis, with a main focus on ethical analysis. From the medical perspective, (...) it is critical to ensure the quality and safety of reused organs, but we lack sufficient empirical data pertaining to medical risk. From the legal perspective, a comparative examination of laws in the United States and Japan affirms no illegality, but legal scholars disagree on the appropriate analysis of the issues, including whether or not property rights apply to transplanted organs. Ethical arguments supporting the reuse of organs include the analogous nature of donation to gifts, the value of donations as inheritance property, and the public property theory as it pertains to organs. Meanwhile, ethical arguments such as those that address organ recycling and identity issues challenge organ reuse. We conclude that organ reuse is not only ethically permissible, but even ethically desirable. Furthermore, we suggest changes to be implemented in the informed consent process prior to organ transplantation. The organ transplant community worldwide should engage in wider and deeper discussions, in hopes that such efforts will lead to the timely preparation of guidelines to implement reuse cardiac organ transplantation as well as reuse transplantation of other organs such as kidney and liver. (shrink)

The management of children born with trisomy 18 is controversial, and both providers and parents often have differing opinions. Many parents choose to terminate the pregnancy while others go forward, making decisions based on their beliefs, understanding, and physician recommendations. Physicians are similarly divided regarding treatment of these children, as some feel that aggressive treatments are futile while others defer to the parents' wishes.Interrupted aortic arch with ventricular septal defect in children with trisomy 18 presents an ethical dilemma that highlights (...) the kinds of controversies in medical decision making facing physicians on a daily basis. Repair of interrupted aortic arch with ventricular septal defect poses a high risk to newborns with or without trisomy 18. Therefore, the option for surgery should be treated as with any routine informed consent process. Parents should be counseled about the risks, benefits, alternatives, and the likelihood of success both short and long term and be should offered a choice between surgery and palliative care. (shrink)

When successful solid organ transplantation was initiated almost 40 years ago, its current success rate was not anticipated. But continuous efforts were undertaken to overcome the two major obstacles to success: injury caused by interrupting nutrient supply to the organ and rejection of the implanted organ by normal host defense mechanisms. Solutions have resulted from technologic medical advances, but also from using organs from different sources. Each potential solution has raised ethical concerns and has variably resulted in societal acclaim, censure, (...) and apathy. Transplant surgery is now well accepted, and the list of transplant candidates has grown far quicker than the availability of organs. More than 30,000 patients were awaiting organs for transplantation at the end of March 1993. While most organs came from donors declared dead by brain criteria, the increasing shortage of donated organs has prompted a reexamination of prior restrictions of donor groups. Recently, organ procurement from donors with cardiac death has been reintroduced in the United States. This practice had been mostly abandoned by the U.S. and some, though not all, other countries. Transplantation has been more successful using organs procured from heart-beating, "brain dead" cadavers than organs from non-heart-beating cadavers. However, recent advances have led to success rates with organs from non-heart-beating donors that may portend large increases in organ donation and procurement from this source. (shrink)

The purpose of this study was to explore the lived experiences of three couples in each of which one of the partners has undergone coronary artery bypass graft surgery . Previous research has been largely quantitative and focused on discrete dimensions of marital quality, spousal support, or patient and spouse distress. However, few studies explored the experiences of couples as a marital dyad. This study expanded upon previous research to explore couples' experiences of bypass surgery and to examine (...) the possibility of shared meanings about that event. Shared meaning refers to the congruent beliefs that a couple has about their CABG experience . Three couples from the Cardiac Wellness Institute of Calgary were interviewed and the transcribed interviews analyzed. The descriptive phenomenological psychological method was used to identify the underlying meaning structures of the couples' experiences. The analysis revealed a single structure consisting of seven interrelated constituents describing the psychological essence of the couples' experiences of bypass surgery. The study extended the understanding of what CABG is like for a marital dyad, particularly for medical and psychological practitioners who work with CABG patients and their spouses. (shrink)

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 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)

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.

The aim of this paper is to enhance doctors’ awareness of implicit understandings between doctors and patients in the context of pre-operative communication of risks. This paper draws on insights from the philosophy of language – in particular pragmatic analysis tools – that make explicit the implicit understandings of the interaction. Mastering not only _what is said_ but also _what is unsaid_ allows doctors to improve their communication with their patients. I suggest that being aware of the implications of the (...) interactions is useful for improving both the doctor’s and the patient’s experience, further strengthening the therapeutic alliance. In this article I analyze actual cases involving pre-operative evaluation before cardiac surgery from a philosophy of language perspective. The paper is structured as follows: a description of the relevant philosophy of language tools that I will apply; an overview of the risk-communication context; an explanation of the link between “the implicit dimension” and trust, addressing whether the doctor needs to convey the whole truth; and the analysis of real cases. In conclusion, I re-emphasize the importance of implicit meanings during risk communication. (shrink)

Background:Maintaining patient’s dignity in intensive care units is difficult because of the unique conditions of both critically-ill patients and intensive care units.Objectives:The aim of this study was to uncover the cultural factors that impeded maintaining patients’ dignity in the cardiac surgery intensive care unit.Research Design:The study was conducted using a critical ethnographic method proposed by Carspecken.Participants and research context:Participants included all physicians, nurses and staffs working in the study setting. Data collection methods included participant observations, formal and informal (...) interviews, and documents assessment. In total, 200 hours of observation and 30 interviews were performed. Data were analyzed to uncover tacit cultural knowledge and to help healthcare providers to reconstruct the culture of their workplace.Ethical Consideration:Ethical approval for the study from Ethics committee of Isfahan University of Medical Sciences was obtained.Findings:The findings of the study fell into the following main themes: “Presence: the guarantee for giving enough attention to patients’ self-esteem”, “Instrumental and objectified attitudes”, “Adherence to the human equality principle: value-action gap”, “Paternalistic conduct”, “Improper language”, and “Non-interactive communication”. The final assertion was “Reductionism as a major barrier to the maintaining of patient’s dignity”.Discussion:The prevailing atmosphere in subculture of the CSICU was reductionism and paternalism. This key finding is part of the biomedical discourse. As a matter of fact, it is in contrast with dignified care because the latter necessitate holistic attitudes and approaches.Conclusion:Changing an ICU culture is not easy; but through increasing awareness and critical self-reflections, the nurses, physicians and other healthcare providers, may be able to reaffirm dignified care and cure in their therapeutic relationships. (shrink)

Clinical ethics has been developing in paediatric healthcare for several decades. However, information about how paediatricians use clinical ethics case consultation services is extremely limited. In this project, we analysed a large set of case records from the clinical ethics service of one paediatric hospital in Australia. We applied a paediatric-specific typology to the case referrals, based on the triadic doctor–patient–parent relationship. We reviewed the 184 cases referred to the service in the period 2005–2014, noting features including the type of (...) case, the referring department(s) and the patient9s age at referral. The two most common types of referral involved clinician uncertainty about the appropriate care pathway for the child (26% of total referrals) and situations where the child9s parents disagreed with the doctors’ recommendations for the child9s care (22% of total referrals). Referrals came from 28 different departments. Cancer, cardiology/cardiac surgery and general medicine referred the highest numbers of cases. The most common patient age groups were children under 1, and 14–15 years old. For three controversial areas of paediatric healthcare, clinicians had initiated processes of routine review of cases by the clinical ethics service. These insights into the way in which one very active paediatric clinical ethics service is used further our understanding of the work of paediatric clinical ethics, particularly the kinds of ethically challenging cases that paediatricians view as appropriate to refer for clinical ethics support. (shrink)

Medical missions to provide cardiac surgical procedures in developing and technologically less advanced countries is a great challenge. It is also immensely gratifying, personally and professionally. Such missions typically present significant ethical dilemmas, especially making difficult choices, given limited time and resources, and the inability to help all children in need of cardiac surgery. We describe some of these issues from our perspective as visiting cardiologists.

Objective The objective of this article is to provide an ethical analysis of a high-risk, advanced treatment case where the patient received transcatheter aortic valve insertion, for aortic valve stenosis. Particular emphasis will be placed upon the significance of evidence and the implications for priority setting. Method One paradigmatic case involving a TAVI patient from a large university hospital in Norway is described and analysed. The method used was ethical case analysis modified after Kymlicka by Miljeteig et al. Perioperative mortality (...) risk was estimated using the Euroscore risk-logarithm and the Society of Thoracic Surgeons’ risk model, STS. These predict the risk of operative mortality and morbidity associated with adult cardiac surgery. GRADE, the Grading of Recommendations Assessment, Development and Evaluation, was used to evaluate the evidence. Results In the case analysis, we found that it would be ethically justifiable not to recommend TAVI treatment for this patient. Although the patient had a severe condition in need of treatment, the expected improvement was marginal, the quality of evidence was low and the opportunity costs for other patients and society were higher than usually deemed appropriate. Conclusions Decision-making in the absence of high quality evidence from randomized trials is a complex process involving difficult ethical judgments. Novel high-risk devices often enter the European market with limited clinical evidence. Transparency and improved clinical evaluation are required so patient safety is not jeopardized. We argue that implementation of high risk, high cost interventions should be better regulated at a national level. Background All clinical decisions imply priority setting and therefore indirectly affect other patients and other patient groups. The use of expensive, innovative health technologies has an affect on individual patients as well as on other patient groups competing for the same resources. (shrink)

This paper is concerned with events that were the subject of an inquest into the deaths of 12 children who died while undergoing or shortly after having undergone cardiac surgery at the Winnipeg Health Sciences Centre, Manitoba, Canada, during 1994. A notable finding of the Sinclair Inquest was that nurses involved with the pediatric cardiac surgery program were concerned about the competence of the surgeon and made sustained efforts throughout 1994 to have these concerns addressed. That (...) the nurses’ concerns were not taken seriously is the central problem of this paper. Essentially, the position articulated is that gendered and gendering discourses constituted a form of power that structured the field of nurses’ possible actions. These discourses constituted a resource to make nurses knowable, to produce them as certain forms of the person, and were therefore part of what governed nurses everyday conduct. Though neither simply good nor bad in themselves, in this case, these discourses had constraining effects on how nurses were able to conduct themselves. (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 (...) 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 (...) surgery concerning the solution of the practical medical problem of myocardial protection during open heart surgery. (shrink)

I am writing this during the Christmas holidays, and one of the papers in this issue brings to mind the extraordinary serenity and peace of mind with which Joseph and Mary dealt with the strange happenings surrounding the birth of their first son, baby Jesus, who according to the Bible was a N=1 experiment. The paper by Nathan et al studies parental decision-making in relation to neonatal research. They used the MacArthur competence assessment tool for clinical research to assess parental (...) competence in parents of neonates undergoing cardiac surgery. The parents were asked for permission to enrol the neonates in one of three non-therapeutic studies before the surgery. The study shows that parents in this situation in general had …. (shrink)

Important lessons must be learned from the Bristol inquiryI was disturbed when I first read the following in an October 1998 issue of the Medical Journal of Australia."In June 1998, the Professional Conduct Committee of the General Medical Council of the United Kingdom concluded the longest running case it has considered [this] century. Three medical practitioners were accused of serious professional misconduct relating to 29 deaths in 53 paediatric cardiac operations undertaken at the Bristol Royal Infirmary between 1988 and (...) 1995. All three denied the charges but, after 65 days of evidence over eight months , all three were found guilty." "The doctors concerned are Mr James Wisheart, a paediatric and adult cardiac surgeon and the former Medical Director of the United Bristol Healthcare Trust; Mr Janardan Dhasmana, paediatric and adult cardiac surgeon; and Dr John Roylance, a former radiologist, and Chief Executive of the Trust." "The central allegations were that the Chief Executive and the Medical Director allowed to be carried out, and the two paediatric cardiac surgeons carried out, operations on children knowing that the mortality rates for these operations, in the hands of these surgeons, were high. Furthermore, the surgeons were accused of not communicating to the parents the correct risk of death for these operations in their hands.1"Mr Wisheart and Dr Roylance were subsequently struck off the medical register. Mr Dhasmana was disqualified from practising paediatric cardiac surgery for three years. The doctors required police protection as they left the General Medical Council hearing as furious parents shouted “murderer” and “bastard”.2Why did this occur?Dr Stephen Bolsin has presented a …. (shrink)

IntroductionPreoperative neurocognitive disorder is a common condition affecting 14–51. 7% of the elderly population. General anesthesia has already been associated with the one-year post-operative neurocognitive disorder, specifically, a deficit in executive function, measured by the Trail Making Test B, but its long-term effects on cognitive function have not been investigated. We aimed to detect preO-NCD prevalence in patients scheduled for cardiac surgery and further investigate the possible role of previous general anesthesia in general preoperative cognitive status [measured via (...) the Montreal Cognitive Assessment ] and/or in executive functioning.MethodsIn this observational, prospective study, 151 adult patients scheduled for elective cardiac surgery underwent MoCA and TMT-B. Data on age, education, pGA, comorbidities, and laboratory results were collected.ResultsWe discovered a general cognitive function impairment of 79.5% and an executive function impairment of 22%. Aging is associated with an increased likelihood and education with a decreased likelihood of general cognitive impairment, but only education was significantly associated with a decreased likelihood of executive function impairment. While pGA did not significantly affect preO-NCD, a noteworthy interaction between aging and pGA was found, resulting in a synergistic effect, increasing the likelihood of executive function impairment.ConclusionWe found a high prevalence of preO-NCD in patients scheduled for cardiac surgery. General cognitive function impairment is highly associated with advancing age. However, older patients with at least one pGA appeared to be at an increased risk of preO-NCD, especially executive function impairment, suggesting that TMT-B should be associated with MoCA in the preoperative cognitive evaluation in this population. (shrink)

Because complex organs taken from unequivocally dead people are not suitable for transplantation, human death has been redefined so that it can be certified at some earlier stage in the dying process and thereby make viable organs available without legal problems. Redefinitions based on concepts of "brain death" have underpinned transplant practice for many years although those concepts have never found universal philosophical acceptance. Neither is there consensus about the clinical tests which have been held sufficient to diagnose the irreversible (...) cessation of all brain function – or as much of it as is deemed relevant – while the body remains alive. For these reasons, the certification of death for transplant purposes on "brain death" grounds is increasingly questioned and there has been pressure to return to its diagnosis on the basis of cardiac arrest and the consequent cessation of blood circulation throughout the body. While superficially a welcome return to the traditional and universally accepted understanding of human death, examination of the protocols using such criteria for the diagnosis of death prior to organ removal reveals a materially different scenario in which the circulatory arrest is not certainly final and purely nominal periods of arrest are required before surgery begins. Recognizing the probably unresolvable conflict between allowing enough time to pass after truly final circulatory arrest for a safe diagnosis of death and its minimization for the sake of the wanted organs, Verheijde and colleagues follow others in calling for the abandonment of the "dead donor rule" and the enactment of legislation to permit the removal of organs from the dying, without pretence that they are dead before that surgery. While it may be doubted whether such a "paradigm change" in the ethics of organ procurement would be accepted by society, their call for its consideration as a fully and fairly informed basis for organ donation is to be applauded. (shrink)

This timely book analyses and evaluates ethical and social implications of recent developments in reporting surgeon performance. It contains chapters by leading international specialists in philosophy, bioethics, epidemiology, medical administration, surgery, and law, demonstrating the diversity and complexity of debates about this topic, raising considerations of patient autonomy, accountability, justice, and the quality and safety of medical services. Performance information on individual cardiac surgeons has been publicly available in parts of the US for over a decade. Survival rates (...) for individual cardiac surgeons in the UK have recently been released to the public. This trend is being driven by various factors, including concerns about accountability, patients' rights, quality and safety of medical care, and the need to avoid scandals in medical care. This trend is likely to extend to other countries, to other clinicians, and to professions beyond health care, making this text an essential addition to the literature available. (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)

Tough Decisions presents many of the complex medical-ethical issues likely to confront practitioners in critical situations. Through fictional but true-to-life cases, vividly described in clinical terms, the authors force the reader to choose among different courses of action and to confront a range of possible consequences. A two-year-old has been diagnosed with a malignant brain tumor. Who should be allowed to make decisions about the child's surgery and subsequent therapy, and on what basis? A family history of Huntington's disease (...) emerges when a fiancee seeks genetic counseling. Who should be informed? An elderly patient suffers a cardiac arrest. Should "do-not-resuscitate" orders always be followed? How should legal liability affect medical decisions? Other ethical issues considered include surgical complications, patient autonomy, rights of the retarded, informed consent, euthanasia, and the fair allocation of finite resources. Each case presented conveys the drama and pressure of weighing alternatives, and the realistic consequences of the choices made. The authors show that ethical decision-making is not limited to "matters of life and death", and that it is not the decision but the ethical process by which it is made that gives the decision moral integrity. With realistic detail, Tough Decisions brings to life and makes the student share in the many complexities of ethical decision-making when the health and lives of patients are at stake. (shrink)

... 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)

Interventional cardiologists are commonly faced with patients who prefer percutaneous coronary intervention (PCI) rather than coronary artery bypass surgery (CABG). Many prefer PCI even when CABG is recommended. Doctors may wonder whether (as the cardiac surgeons suspect) they consciously or unconsciously influence patients to choose PCI. We consider reasons why patient preferences in this context are not irrational.

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: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)

This book offers a theoretical and practical overview of the specific ethical and legal issues in pediatric organ transplantation. Written by a team of leading experts, Ethical Issues in Pediatric Organ Transplantation addresses those difficult ethical questions concerning clinical, organizational, legal and policy issues including donor, recipient and allocation issues. Challenging topics, including children as donors, donation after cardiac death, misattributed paternity, familial conflicts of interest, developmental disability as a listing criteria, small bowel transplant, and considerations in navigating the (...) media are discussed. It serves as a fundamental handbook and resource for pediatricians, transplant health care professionals, trainees, graduate students, scholars, practitioners of bioethics and health policy makers. (shrink)

Previous studies suggest in line with dual process models that interoceptive skills affect controlled decisions via automatic or implicit processing. The “framing effect” is considered to capture implicit effects of task-irrelevant emotional stimuli on decision-making. We hypothesized that cardiac awareness, as a measure of interoceptive skills, is positively associated with susceptibility to the framing effect. Forty volunteers performed a risky-choice framing task in which the effect of loss versus gain frames on decisions based on identical information was assessed. The (...) results show a positive association between cardiac awareness and the framing effect, accounting for 24% of the variance in the framing effect. These findings demonstrate that good interoceptive skills are linked to poorer performance in risky choices based on ambivalent information when implicit bias is induced by task-irrelevant emotional information. These findings support a dual process perspective on decision-making and suggest that interoceptive skills mediate effects of implicit bias on decisions. (shrink)

Certain organoid subtypes are particularly sensitive. We explore whether moral intuitions about the heartbeat warrant unique moral consideration for newly advanced contracting cardiac organoids. Despite the heartbeat’s moral significance in organ procurement and abortion discussions, we argue that this significance should not translate into moral implications for cardiac organoids.

The ability to alter one’s emotional responses is central to overall well-being and to effectively meeting the demands of life. One of the chief symptoms of events such as trauma, that overwhelm our capacities to successfully handle and adapt to them, is a shift in our internal baseline reference such that there ensues a repetitive activation of the traumatic event. This can result in high vigilance and over-sensitivity to environmental signals which are reflected in inappropriate emotional responses and autonomic nervous (...) system dynamics. In this article we discuss the perspective that one’s ability to self-regulate the quality of feeling and emotion of one’s moment-to-moment experience is intimately tied to our physiology, and the reciprocal interactions among physiological, cognitive, and emotional systems. These interactions form the basis of information processing networks in which communication between systems occurs through the generation and transmission of rhythms and patterns of activity. Our discussion emphasizes the communication pathways between the heart and brain, as well as how these are related to cognitive and emotional function and self-regulatory capacity. We discuss the hypothesis that self-induced positive emotions increase the coherence in bodily processes, which is reflected in the pattern of the heart’s rhythm. This shift in the heart rhythm in turn plays an important role in facilitating higher cognitive functions, creating emotional stability and facilitating states of calm. Over time, this establishes a new inner-baseline reference, a type of implicit memory that organizes perception, feelings, and behavior. Without establishing a new baseline reference, people are at risk of getting “stuck” in familiar, yet unhealthy emotional and behavioral patterns and living their lives through the automatic filters of past familiar or traumatic experience. (shrink)

Cardiac disease is the leading cause of death worldwide. Cardiovascular diseases can be prevented if an effective diagnostic is made at the initial stages. The ECG test is referred to as the diagnostic assistant tool for screening of cardiac disorder. The research purposes of a cardiac disorder detection system from 12-lead-based ECG Images. The healthcare institutes used various ECG equipment that present results in nonuniform formats of ECG images. The research study proposes a generalized methodology to process (...) all formats of ECG. Single Shoot Detection MobileNet v2-based Deep Neural Network architecture was used to detect cardiovascular disease detection. The study focused on detecting the four major cardiac abnormalities with 98% accuracy results were calculated. The work is relatively rare based on their dataset; a collection of 11,148 standard 12-lead-based ECG images used in this study were manually collected from health care institutes and annotated by the domain experts. The study achieved high accuracy results to differentiate and detect four major cardiac abnormalities. Several cardiologists manually verified the proposed system’s accuracy result and recommended that the proposed system can be used to screen for a cardiac disorder. (shrink)

Surgical clinical trials have seldom used a “sham” or placebo surgical procedure as a control, owing to ethical concerns. Recently, several ethical commentators have argued that sham surgery is either inherently or presumptively unethical. In this article I contend that these arguments are mistaken, and that there are no sound ethical reasons for an absolute prohibition of sham surgery in clinical trials. Reflecting on three cases of sham surgery, especially on the recently reported results of a sham-controlled (...) trial of arthroscopic surgery for arthritis of the knee, I present an ethical analysis that focuses on the methodological rationale for use of sham surgery, risk-benefit assessment, and informed consent. (shrink)