Managing cardiac illness is not easy because it dramatically disrupts people’s daily life and both the patient and his/her spouse are at risk for experiencing distress, which, in turn, may affect the support provided by the partner as caregiver. The partner, in fact, is the main source of support, but his/her support may sometimes be inadequate. In addition, dyadic coping could likely be a moderating factor. The main aim of the present study was to examine the role that (...) dyadic coping plays in moderating the link between patient and partner cardiac illness-related distress and partner support. The study included 100 married couples faced with cardiac illness who completed a self-report questionnaire. We analyzed our data in PROCESS using multiple regressions in order to assess the moderating effects of DC responses in the relationship between the couple’s cardiac illness-related distress and partner support. With regard to patient distress, results showed that higher levels of patient anxiety and depression were linked with ineffective partner support. With regard to partner distress, higher levels of partner depression were linked with hostility; higher levels of partner depression and anxiety were associated with less partner support for patient engagement. Moreover, the association between distress and partner support was moderated by the quality of DC. In particular, low positive DC represented a risk factor for both the patient and the partner during a cardiac illness, as low positive DC exacerbated the link between patient and partner distress and less effective partner support styles. Also, higher levels of negative DC were risky for couples: The association between distress and less adequate partner supportive behaviors was stronger in the case of higher negative DC. These results imply a need for psychosocial interventions for couples in cardiac illness, especially for couples lacking relational competences, such as positive dyadic coping. (shrink)

A 68-year-old patient who suffered from gastric cancer diagnosed 8 months earlier presented with multiple peritoneal and hepatic metastasis, despite several rounds of chemo- and radiotherapy. After admission to hospital, his general condition quickly became severely compromised. He was nearly emaciated, despite being on partial parenteral feeding. Four years earlier, due to a cardiac arrhythmia that was refractory to medication, the patient had a cardiac pacemaker implanted, regulated to go off at frequencies of below 70 beats per minute. (...) Given the patient's terminal situation, the team started developing some doubts about the pacemaker's effects during his dying process. The patient had mentioned his intention to donate his pacemaker after his death, but had not asked for its deactivation. The specialists were not sure about the effect of the pacemaker in unnecessarily prolonging the patient's final hour. Nevertheless, they opposed deactivation, which they considered ethically uncertain. The family, who had been initially for the deactivation, decided against it. The patient's condition was progressively deteriorating, as he was falling into a state of sopor and, later, into a coma. (shrink)

Conserving the vitality of suffering: addressing family constraints to illness conversationsWhen persons are confronted with life‐threatening or chronic illness, there is always a possibility that family members other than the person experiencing the illness also suffer as they attempt to manage their own distress. This paper describes exemplars from a hermeneutic study that explored therapeutic conversations between nurses and families who were living with a member experiencing ischaemic heart disease. These conversations uncovered the complexity of both individual (...) and family suffering following acute cardiac illness events, and called attention to nursing practices that addressed some of the ways that family members were constrained from having conversations about the illness. When spaces were created for these conversations to occur, possibilities for making sense of illness and suffering were revealed as vital. These understandings support the efforts of family members to sustain and conserve family relationships in the face of illness and suffering, and inform both the professional and personal lives of nurses. (shrink)

A number of studies show that when doctors become ill, there is often ambiguity in the division of roles and responsibilities in the medical encounter. Yet little is known about how the dilemma of the sick doctor has changed over time. This article explores the experience of illness among physicians by applying an historical, narratological approach to three doctor’s narratives about personal cases of cardiac disease: Max Pinner’s from the 1940s, Robert Seaver’s from the 1980s, and John Mulligan’s (...) from 2015. Drawing on Erving Goffman’s principles of social interaction, I argue that part of the challenge in the analysed narratives is because when doctors seek medical attention for themselves, the ensuing medical ‘drama’ suffers. I compare the three narratives to argue that the experience of becoming a patient while simultaneously remaining a doctor is a challenge that has changed over time. In Pinner’s narrative, the patient identity is both undesirable and inaccessible; in Seaver’s, role ambivalence between doctor and patient is the most salient feature; for Mulligan, his personal rather than professional experience of illness is the overarching theme of the narrative. Finally, I suggest that an awareness of how the medical drama often changes when doctors are patients might prove beneficial both for the doctor-patients and providers of medical care. (shrink)

Background: Heart failure is a major growing problem and affects not only patients but also their families and community networks and reduces the functional capacity of patients and impairs their social life. Research questions: This study was conducted to investigate relationship between illness-related worries and social dignity in patients with heart failure. Design: The study had a descriptive-analytic design, and data collection was carried out by means of two specific questionnaires. Participants and context: A total of 130 inpatients from (...) cardiac wards in hospitals affiliated with Tehran and Shahid Beheshti University of Medical Sciences participated. Ethical consideration: This study was approved by the Research Committee of Shahid Beheshti University of Medical Sciences. Results: The highest mean score of illness-related worries was attributed to the dimension of patient’s worry of physical–mental complications, and the least mean score was related to the dimension of the worry about the future of disease. The highest mean score of social dignity was associated with the dimension of social communication and support, and the least is attributed to the dimension of burden to others (economic). Pearson’s statistical test showed a significant correlation (r = 0.455, p < 0.05) between the score of illness-related worries and social dignity. Discussion: As the result of this study showed that reducing illness-related worries in patients with heart failure can improve their social dignity, using strategies to decrease worries and promote social dignity in these patients is recommended. Conclusion: This study affirms the importance of careful evaluation of individual patients to determine their needs related to dignity. We hope these results will help to promote actions by patient-care staff that honor and support patient dignity, resulting in benefits to patients and developing the quality of care based on human rights. (shrink)

BackgroundConsent for data research in acute and critical care is complex as patients become at least temporarily incapacitated or die. Existing guidelines and regulations in the European Union are of limited help and there is a lack of literature about the use of data from this vulnerable group. To aid the creation of a patient-centred framework for responsible data research in the acute setting, we explored views of patients and next-of-kin about the collection, storage, sharing and use of genetic and (...) health-related data for observational research.MethodsWe conducted qualitative interviews (n = 19) with Dutch sudden cardiac arrest survivors who donated clinical and socio-economic data and genetic samples to research. We also interviewed their next-of-kin. Topics were informed by ethics literature and we used scenario-sketches to aid discussion of complex issues.ResultsSudden cardiac arrest survivors displayed limited awareness of their involvement in health data research and of the content of their given consent. We found that preferences regarding disclosure of clinically actionable genetic findings could change over time. When data collection and use were limited to the medical realm, patients trusted researchers to handle data responsibly without concern for privacy or other risks. There was no consensus as to whether deferred consent should be explicitly asked from survivors. If consent is asked, this would ideally be done a few months after the event when cognitive capacities have been regained. Views were divided about the need to obtain proxy consent for research with deceased patients’ data. However, there was general support for the disclosure of potentially relevant post-mortem genetic findings to relatives.ConclusionsSudden cardiac arrest patients’ donation of data for research was grounded in trust in medicine overall, blurring the boundary between research and care. Our findings also highlight questions about the acceptability of a one-time consent and about responsibilities of patients, researchers and ethics committees. Finally, further normative investigation is needed regarding the (continued) use of participants’ data after death, which is of particular importance in this setting. Our findings are thought to be of relevance for other acute and life-threatening illnesses as well. (shrink)

With the pressing shortage of human organs and recent breakthroughs in gene editing, xenotransplantation—using animal organs, tissues or cells for human transplants—offers new hope for patients on wait lists. The use of genome editing technologies to produce xenotransplants from pigs with reduced immunogenicity has recently brought renewed attention to the field while also raising a host of ethical dilemmas. These concerns include animal welfare, the risks of zoonotic diseases, the moral implications of crossing species boundaries and the potential inequities in (...) access to such treatments. In their article ‘Who shall go first? A multicriteria approach to patient selection for first clinical trials of cardiac xenotransplantation’,1 Kögel and colleagues propose an ethical framework for selecting patients in cardiac xenotransplantation trials. They argue that while significant advances have been made with xenotransplants in brain-dead humans, limited knowledge can be gained from procedures performed outside clinical trials. According to them, knowledge production should be prioritised, and terminally ill patients who are unlikely to survive would not contribute meaningfully to scientific understanding or benefit from the procedure. At the core of xenotransplantation ethics …. (shrink)

An individual’s right to refuse life-sustaining treatment is a fundamental expression of patient autonomy; however, supporting this right poses ethical dilemmas for healthcare providers when the patient has attempted suicide. Emergency physicians encounter patients who have attempted suicide and are likely among the first medical providers to face the dilemma of honoring the patient’s DNR or intervening to reverse the effects of potentially fatal actions. We illustrate this issue by introducing a case example in which the DNR of a terminally (...) ill woman was not honored because the cause of her cardiac arrest was suicide. We argue that although a terminal diagnosis should change the way health care providers respond to a suicide attempt, many of the theoretical underpinnings for how one should treat suicide attempts—especially the criterion of external reasonability, that is the action to withhold or withdraw life-sustaining measures is reasonable independent of the precipitating event—are common to all situations :3–12, 2013). The presumption that patients who attempt suicide lack capacity due to acute mental illness is flawed because it fails to account for a competent individual’s reasonable preference to not be forced to live in an unbearable, terminal condition. In states without legislation allowing physician aid in dying, patients and providers must grapple with these limitations on a case-by-case basis. In cases where the patient has a limited life expectancy and there is not concern for psychiatric illness as the primary cause of the suicidal action, we argue that the negative right to refuse life-sustaining treatment should prevail. (shrink)

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)

This book examines the many ethical issues that are encountered in the Pediatric Intensive Care Unit. It supports pediatricians, nurses, residents, and other providers in their daily management of critically ill children with the dilemmas that arise. It begins by examining the evolution of pediatric critical care, and who is now impacted by this advancing medical technology. Subsequent chapters explore specific ethical concerns and controversies that are commonly encountered. These topics include how to conduct end-of-life discussions with families facing a (...) myriad of challenging choices. It goes on to explore the concept of futility, and what that does and does not mean in the pediatric ICU setting. Controversial subjects such as children as organ donors, particularly using donation after cardiac death, in addition to issues surrounding the declaration of brain death are covered. Additional chapters address resource allocation, and also analyze the use of long-term technology in chronically critically ill children. Chapters include case examples with guidance on how to work through similar difficulties and decision-making. While this book is specifically targeted for care providers at the ICU bedside, it is also of benefit to medical students, students in bioethics, practicing ethical consultants and families who are dealing with critically ill children. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Whose Voice Matters? The Role of Ethics Consultation in Supporting the 16-Year-Old Healthcare Decision-Maker of a Critically Ill NeonateMichelle ProngEditor’s Note. The details of the patient case presented below have been modified to protect the family’s privacy. Despite these modifications, the author has made every effort to preserve the story’s clinical, social, and ethical nuances.The patient was born at 31 weeks with Trisomy 13 and lived her entire life (...) in the NICU. She was born to a 16-year-old mother (who I will call M.H.) as the result of an unintended pregnancy. This child was just about a month old when I became part of her care team. The patient was born with a severe congenital heart defect that our pediatric cardiac surgery team—as well as surgical teams at multiple other academic children’s hospitals—determined to be inoperable. Because of her severe heart defect, she required significant respiratory support throughout her life and continuous IV medications to keep her organs perfused.When I came on service, M.H. visited irregularly and depended on her mother (the patient’s grandmother, who I will call D.R.) for transportation. Social work had arranged for M.H. to have daily transportation to the hospital after school and work; however, M.H. was denied the opportunity to spend the night with her infant. It was against hospital policy for minors to stay overnight as visitors, and additional visitation guidelines related to COVID precautions were also in place at the time. As her biological mother, M.H. was designated as the patient’s healthcare decision-maker. The inability for M.H. to stay overnight on the basis of her age despite being the patient’s parent and healthcare decision-maker generated significant moral distress for several members of the care team. The social dynamic between M.H. and D.R. was such that D.R. was far more participatory in rounds and goals of care conversations, and M.H. was almost always reserved and withdrawn. On multiple occasions, different team members attempted to have conversations directly with M.H. She either was not engaged in the conversation, would answer with short phrases, or, when D.R. was present, would defer to D.R. to speak for her.Throughout the patient’s life, D.R. seemed to be the driving force behind most treatment and goals of care decisions. In multiple conversations I had with the family, both one-on-one with M.H. and jointly with M.H. and D.R., it was made clear that they wanted “everything done” and were hopeful for “a miracle.” D.R. emphasized that she didn’t want anyone to “give up” on the patient and wanted to exhaust all possible options for a cure. Overall, our team had become increasingly concerned that the medical decision makers for this patient did not comprehend the very poor prognosis of her congenital cardiac anomaly, either with or without surgery. As the medical team, we would be subjecting this child to harm that would be unlikely to change her prognosis. [End Page 19]Our NICU team, as well as various other teams, discussed the case repeatedly without a resolution that felt satisfactory. A complicating factor for this particularly socially and ethically challenging case was that the team turned over relatively frequently during the patient’s long-term stay, making it difficult for each successive team to understand what had already been done for this patient and her family. We decided to seek help from the Clinical Ethics Consulting (CEC) service. My expectation for the CEC service was that the consultant would help our team think differently about both the clinical and social elements of the situation and help us come to a resolution since we could not figure out a good solution on our own.Our consult question for the CEC was fourfold: 1) Did the patient’s mother meet criteria for an emancipated minor (to get around the visitation policy), 2) Is M.H. the appropriate healthcare decision maker given her lack of engagement in goals of care conversations and perceived understanding of the severity of her... (shrink)

In the mid 1980s it was apparent that the need for organ donors exceeded those willing to donate. Some University of Pittsburgh Medical Center (UPMC) physicians initiated discussion of possible new organ donor categories including individuals pronounced dead by traditional cardiac criteria. However, they reached no conclusion and dropped the discussion. In the late 1980s and the early 1990s, four cases arose in which dying patients or their families requested organ donation following the elective removal of mechanical ventilation. Controversy (...) surrounding these cases precipitated open discussion of the use of organ donors pronounced dead on the basis of cardiac criteria. Prolonged deliberations by many committees in the absence of precedent ultimately resulted in what is, to our knowledge, the country's first policy for organ donation following elective removal of life support. The policy is intricate and conservative. Care was taken to include as many interested parties as possible in an effort to achieve representative and broad based support. This paper describes the development of the UPMC policy on non-heart-beating organ donation. (shrink)

Utilization of resources in coping with chronic illness Research conducted to date has evidenced the importance of single resources for adaptation to illness. The aim of the presented study was to take into account many resources so as to determine their structure and the way of utilization in various patient groups. The Resourcefulness for Recovery Inventory measuring 18 personal and social resources was used for this purpose. Participants in the study were 115 patients suffering from cardiovascular or rheumatoid (...) diseases, or from cancer. The patients were found to utilize cognitive, emotional and behavioral resources, as well as social support in their adaptation to illness. The highest level of resource utilization was found in the cardiac group, and the lowest - in cancer patients. (shrink)

Hospitalization is a unique health-illness transition for most elderly people. Whether the patient's health-related needs are met or not often iiifluence his or her appraisal of quality of life during hospitalization. This qualitative study explored the health needs of elderly Chinese male cardiac patients during their hospitalization. Eighteen subjects were recruited from a veterans' hospital in northern Taiwan. These men all lived alone before their hospital admission. Data were gathered using semistructured interviews and then analysed by content analysis. (...) Ninety-four per cent of the subjects described up to three categories of needs: met needs (72%), unmet needs (78%), and expected needs (50%0). Needs that participants believed were met were those for psychological support, spiritual support, tangible support and information. Unmet needs were those for participation in decision making, maintaining daily activities and resuming a preadmission lifestyle. The expected needs included those for learning self-care strategies to maintain their daily activities after discharge from the hospital. The factors that framed the participants' perceptions of different health needs were identified to be lack of family support and locus of control. Finally, a discussion of the context background of this phenomenon, as well as some suggestions for its implications, are provided from a culturally sensitive ethical aspect. (shrink)

Unlike critically ill neonates, care of children with complex cardiac disease increasingly involves use of invasive technologies—such as ventricular assist devices (VAD)—or emergent surgical proced...

BackgroundIn cancer care, do not resuscitate (DNR) orders are common in the terminal phase of the illness, which implies that the responsible physician in advance decides that in case of a cardiac arrest neither basic nor advanced Coronary Pulmonary Rescue should be performed. Swedish regulations prescribe that DNR decisions should be made by the responsible physician, preferably in co-operation with members of the team. If possible, the patient should consent, and significant others should be informed of the decision. (...) Previous studies have shown that physicians and nurses can experience ethical dilemmas in relation to DNR decisions, but knowledge about what ethical reasoning they perform is lacking. Therefore, the aim was to describe and explore what ethical reasoning physicians and nurses apply in relation to DNR-decisions in oncology and hematology care.MethodsA qualitative, descriptive and explorative design was used, based on 287 free-text comments in a study-specific questionnaire, answered by 216 physicians and nurses working in 16 oncology and hematology wards in Sweden. Comments were given by 89 participants.ResultsThe participants applied a situation-based ethical reasoning in relation to DNR-decisions. The reasons given for this were both deontological and utilitarian in kind. Also, expressions of care ethics were found in the material. Universal rules or guidelines were seen as problematic. Concerning the importance of the subject, nurses to a higher extent underlined the importance of discussing DNR-situations, while physicians described DNR-decisions as over-investigated and not such a big issue in their daily work.ConclusionThe study revealed that DNR-decisions in oncology and hematology care gave rise to ethical considerations. Important ethical values described by the participants were to avoid doing harm and to secure a peaceful and “natural” death with dignity for their dying patients. A preference for the expression “allow for natural death” instead of the traditional term “do not resuscitate” was found in the material. (shrink)

Summary Principles Timely support for patients and people close to them, and effective, sensitive communication are essential. Decisions must be based on the individual patient's circumstances and reviewed regularly. Sensitive advance discussion should always be encouraged, but not forced. Information about CPR and the chances of a successful outcome needs to be realistic. Practical matters Information about CPR policies should be displayed for patients and staff. Leaflets should be available for patients and people close to them explaining about CPR, how (...) decisions are made and their involvement in decisions. Decisions about attempting CPR must be communicated effectively to relevant health professionals. In emergencies If no advance decision has been made or is known, CPR should be attempted unless: the patient has refused CPR; the patient is clearly in the terminal phase of illness; or the burdens of the treatment outweigh the benefits. Advance decision making Competent patients should be involved in discussions about attempting CPR unless they indicate that they do not want to be. Where patients lack competence to participate, people close to them can be helpful in reflecting their views. Legal issues Patients' rights under the Human Rights Act must be taken into account in decision making. Neither patients nor relatives can demand treatment which the health care team judges to be inappropriate, but all efforts will be made to accommodate wishes and preferences. In England, Wales and Northern Ireland relatives and people close to the patient are not entitled in law to take health care decisions for the patient. In Scotland, adults may appoint a health care proxy to give consent to medical treatment. Health professionals need to be aware of the law in relation to decision making for children and young people.IntroductionWhy policies are neededCardiopulmonary resuscitation can be attempted on any person whose cardiac or respiratory functions cease. Failure of these functions is part of dying and thus …. (shrink)

Technology is pervasive and overwhelming in the intensive care setting. It has the power to inform and direct the nursing care of critically ill patients. Technology changes the moral and social dynamics within nurse—patient encounters. Nurses use technology as the main reference point to interpret and evaluate clinical patient outcomes. This shapes nurses’ understanding and the kind of care provided. Technology inserts itself between patients and nurses, thus distancing nurses from patients. This situates nurses into positions of power, granting them (...) epistemic authority, which constrains them as moral agents. Technology serves to categorize and marginalize patients’ illness experience. In this article, moral agency is examined within the technologically-mediated context of the intensive care unit. Uncritical use of technology has a negative impact on patient care and nurses’ view of patients, thus limiting moral agency. Through examination of technology as it frames cardiac patients, it is demonstrated how technology changes the way nurses understand and conceptualize moral agency. This article offers a new perspective on the ethical discussion of technology and its impact on nurses’ moral agency. Employing reflective analysis using the technique of embodied reflection may help to ensure that patients remain at the centre of nurses’ moral practice. Embodied reflection invites nurses critically to examine how technology has reshaped conceptualization, understanding, and the underlying motivation governing nurses’ moral agency. (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 (two cardiac (...) surgery intensive care units). 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)

In lieu of an abstract, here is a brief excerpt of the content:Lisa’s StoryLisa P. (wife of patient) and Jeanne KerwinMy husband suffered from sudden onset of heart failure with a very low ejection fraction and was on IV Milrinone at the age of 47. One of the most powerful things he told me was that he was not afraid to die and therefore did not want to move forward with Milrinone. He eventually “did it for the kids.” After the (...) Milrinone drip was no longer working, he was offered an LVAD (left ventricular assist device) to keep him alive. He refused, but the doctor again convinced him to “do it for your kids” and said, “we put these devices in 80-year-olds.” He did not have time to explore any other options and reluctantly accepted the LVAD. It was implanted in May of 2014 in a very long and complicated surgery with a long and difficult recovery. He was in the hospital for a long time, and then he refused to go to rehab upon discharge, making it difficult for our family to manage, as he was extremely weak and needed care of his wound dressing. He worried about the financial [End Page 7] impact of a heart transplant and the medications required, as we were already struggling with the medical bills. He refused to have more surgery with the potential complications and never agreed to get on the transplant waiting list.After the implanted LVAD, my husband was not able to do most of what he loved in life. He couldn’t work (he was a truck driver), he couldn’t go fishing or swimming in the ocean, he couldn’t go hunting and fishing, and his overall physical condition was so poor that he couldn’t cook, garden and, most aggravating to him, he could not take a regular hot shower. The LVAD had to be covered with plastic in order to avoid getting the drive-line area wet, so bathing was a complicated process. He had trouble with stairs, had neuropathic pain in his legs from diabetes, and because of the pain medications, he felt cloudy and dizzy and slept most of the day in his recliner. I took care of him, even after I had to go back to work, and at the same time, I managed our two children (ages 9 and 12 at the time of LVAD).After almost two years of living with the LVAD, multiple hospitalizations for GI bleeds then seizures, more medications, and weekly blood draws for INR1, my husband requested that the LVAD be de-activated and that he be allowed to die of his heart failure. He described his life as “miserable.” He watched as his misery impacted his children and me. He suffered daily and had none of the joys that made life worth living for him. When we approached the cardiac team that implanted and monitored his LVAD with his request, they said “no.” They would not de-activate the LVAD because it was working. It was keeping him alive and he had no other terminal illness. His palliative doctor, who was treating his pain, also heard his request and told us to call for an “ethics consult” to determine if he would be “allowed” to have the LVAD de-activated. We got the number and called on March 31, 2016.At the time of the call to Ethics, we had no idea what “Ethics” was, other than a general definition of the word ethics as in professional behaviors and such. We did not know what to expect but we called. We would never have known to call “Ethics” if the palliative doctor had not advised us to do so, and my husband might have suffered a longer, more painful life both mentally and physically prolonged by the LVAD.We explained the request to the ethics consultant. She listened to my husband describe his daily living and his dissatisfaction with the quality of his life, his physical and emotional suffering, and his wish to rid himself of the LVAD and allow nature to take its course. There was actually no decision to be made on his part. He had already made up... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:TellingAlvan A. IkokuMost everything had gone as I had imagined it. The plan was to eventually do international health work in Africa. So it was important to add another year to my medical studies, to leave Boston and gain some level of comfort working in French. The year was to be divided between France and Gabon. I was more than halfway there, having spent enough time in Paris to (...) feel proficient in the language, and having also completed several months of clinical rotation at the Hôpital Necker. There was one disruption: my father passing, perhaps of cardiac arrest, the attack occurring in the village—over an hour away from the nearest emergency room. The event required a month back home in Nigeria, to carry out funeral ceremonies and attend to my mother. But on my return to Paris the plans remained unchanged. I completed my rotation and soon after I was in Lambaréné. Ready for another three months of clinical work in a Francophone setting. Ready for a rural version of my rotation. Ready too for a second return home. Gabon was close to Nigeria, and I could visit once I was done.Medical school was my first attempt to fulfill deeply felt duties to two homes, Nigeria and the United States. Practicing international health in Africa was a way to resolve any tension between these duties. At the time, this meant training in the States and working to improve health south of the Sahara. There was little room for thinking the reverse might be more appropriate. I wanted to bring a standard of care from one home to another, or as I often said, to learn how to practice with limitations, to be as good a physician as one could in any setting. But one limitation I couldn't accept was a language barrier between myself and my patients. Learning a new language made the most technical text come alive and it made patients people. So I made my case for an additional year of medical school abroad, and it was granted.Once in Lambaréné, my limitations became apparent and troubling. It wasn't simply a matter of still being, in every sense of the word, a medical student, nor was it simply due to the waiting halls— not waiting rooms—of patients at the Polyclinique, almost as full in the evening as they were in the morning. As expected, there were several advanced cases of illness, even deaths, that I felt would have been prevented if we had seen the same patients in Boston. But what made my limitations so keenly felt was confronting them as a provider for people who were surprisingly and intimately not others, people who were suddenly so closely like myself. Gabon was not Nigeria. The fellowship was still meant to occur abroad; it was still a project of global health. Yet the patients themselves resisted that enterprise. They gestured to parts of their body as I had seen aunts, uncles and cousins do. They did to the French language what I had heard many in my family do to English, bending Europe in ways that were too familiar. Again, Gabon was not Nigeria. So this familiarity was neither expected nor prepared for. These encounters left me disarmed, porous and eventually aware that my education [End Page E1] to become a physician had relied on a process of de-familiarization.The inability to alleviate pain, decrease morbidity and prevent mortality felt strangely intimate and demanded reflection. The distance that seemed necessary for clinical practice was not possible, and I needed to learn to care while feeling the discomfort of being familiar. I found one way through language. I let my French become imperfect: bent, stilted, with gaps. The patients filled those gaps with words, or with more questions about their own illness. They seemed less intimidated, more willing to go over what I had encapsulated in a single concise, practiced sentence. They wanted any elegant sentence broken down. I obliged and the goal of each visit became to have the patient form sentences with me. I began to feel that what we produced together should be part of good... (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)

In lieu of an abstract, here is a brief excerpt of the content:Breathing:Proustian Therapy1Christopher Prendergast (bio)I begin with a question I would never have imagined myself asking. Is Proust good for you? Might there even be, albeit in carefully controlled doses, a place for him in modern 'health care'? He certainly belongs in the select, if occasionally scary, company of writers whose name, or that of one of their fictional characters, has lent itself to the designation of a psycho-physical condition (...) often with medical characteristics. A short list includes: Stendhal ('Stendhal syndrome,' the condition of obsessional attachment to works of art); Musset (the 'Musset Sign,' manifested as an uncontrollable tremor of the head); Gogol's Plyushkin in Dead Souls ('compulsive hoarding syndrome'); Dickens's Miss Havisham in Great Expectations ('senile squalor syndrome'); Wilde's Lady Windermere ('Lady Windermere syndrome,' associated with pulmonary illness and breathing difficulties).There is no evidence that Proust was directly acquainted with Wilde's play, but there can be little doubt that what came to be called 'Lady Windermere Syndrome' would have spoken to him loud and clear. In an early story called L'Indifférent, Proust penned an encomium to the air we breathe: "A child who from birth has always breathed without paying any attention has no idea how much the air, which swells so sweetly his chest that he doesn't even notice it, is essential to life." A memory of this is doubtless somewhere in the background of the passing mention in Le Côté de Guermantes of "the alpine resort" that teaches him "that the act of breathing, to which we habitually pay no attention, can be a constant source of pleasure." It was almost certainly also in Proust's thoughts when, in the final volume, he penned the famous definition of Paradise Lost as the place and time of "an air we have breathed before, this purer air which the poets have tried in vain to make reign in paradise and which could not provide this profound feeling of renewal if it has not already been breathed, for the only true paradise is a paradise that we have lost."But the early story, like the novel itself, is also haunted by a subtext in which what is precious to life can also be the enemy of life, as, in an access of fever and sudden convulsion, the child feels himself to be suffocating. The story clearly has its origins in Proust's own life, the moment of his first asthma attack as a young boy on a family outing to the Bois de Boulogne. It struck out of the blue with a frightening intensity, and was to pursue [End Page 49] him throughout his life like a fury, proliferating further symptoms such as emphysema and cardiac seizures. As late as 1919, he writes in a letter of an attack that leaves him "gasping like someone half-drowned who is pulled out of water." And it was there again at the moment of Proust's exit from the world, carried off by a bout of pneumonia exacerbated by a pulmonary abscess.There were treatments and consultations galore, the former on a spectrum from inhalations to cauterizing of the nasal tubes, and the latter including a meeting with his father's colleague, Dr. Buissand, who inclined to the view– and increasingly fashionable in medical circles–that the prime cause was neurasthenic. Proust himself hesitated: in a letter he described it as "a bodily illness," but in the Recherche, "asthma crises" are linked to a "mystery" of the "unconscious" and strike out of the blue. The 'mystery' is often, and plausibly, associated with fear of separation from the protective mother. This will be one of the major themes of the novel, and the source of the "sobs that never cease" of which the narrator speaks in the opening volume. But whether physical or psychosomatic, a guaranteed trigger was proximity to tree blossoms (apple especially virulent) and certain flowers–that is, the very things that, for Proust, often something approaching quasi-sacred status, thus illustrating the law that it is what you most love that can kill you.In the novel, however, much of this is distilled into comedy, all terrifying... (shrink)

Background: Patients often are confronted with the choice to allow cardiopulmonary resuscitation (CPR) should cardiac arrest occur. Typically, informed consent for CPR does not also include detailed discussion about survival rates, possible consequences of survival, and/or potential impacts on functionality post-CPR. Objective: A lack of communication about these issues between providers and patients/families complicates CPR decision-making and highlights the ethical imperative of practice changes that educate patients and families in those deeper and more detailed ways. Design: This review integrates (...) disparate literature on the aftermath of CPR and the ethics implications of CPR decision-making as it relates to and is affected by informed consent and subsequent choices for code status by seriously ill patients and their surrogates/proxies within the hospital setting. Margaret Urban Walker’s moral philosophy provides a framework to view informed consent as a practice of responsibility. Ethical considerations: Given nurses’ communicative skills, ethos of care and advocacy, and expertise in therapeutic relationships, communication around DNAR decision-making might look quite different if institutional norms in education, healthcare, law, and public policy held nurses overtly responsible for informed consent in some greater measure. Findings: Analysis from this perspective shows where changes in informed consent practices are needed and where leverage might be exerted to create change in the direction of deeper and more detailed discussions about CPR survival rates and possible consequences of survival. (shrink)

BackgroundA patient who fulfils the due diligence requirements for euthanasia, and is medically suitable, is able to donate his organs after euthanasia in Belgium, the Netherlands and Canada. Since 2012, more than 70 patients have undergone this combined procedure in the Netherlands. Even though all patients who undergo euthanasia are suffering hopelessly and unbearably, some of these patients are nevertheless willing to help others in need of an organ. Organ donation after euthanasia is a so-called donation after circulatory death (DCD), (...) Maastricht category III procedure, which takes place following cardiac arrest, comparable to donation after withdrawal of life sustaining therapy in critically ill patients. To minimize the period of organ ischemia, the patient is transported to the operating room immediately after the legally mandated no-touch period of 5 min following circulatory arrest. This means that the organ donation procedure following euthanasia must take place in the hospital, which appears to be insurmountable to many patients who are willing to donate, since they already spent a lot of time in the hospital. Case presentationThis article describes the procedure of organ donation after euthanasia starting at home (ODAEH) following anesthesia in a former health care professional suffering from multiple system atrophy. This case is unique for at least two reasons. He spent his last conscious hours surrounded by his family at home, after which he underwent general anaesthesia and was intubated, before being transported to the hospital for euthanasia and organ donation. In addition, the patient explicitly requested the euthanasia to be performed in the preparation room, next to the operating room, in order to limit the period of organ ischemia due to transport time from the intensive care unit to the operating room. The medical, legal and ethical considerations related to this illustrative case are subsequently discussed.ConclusionsOrgan donation after euthanasia is a pure act of altruism. This combined procedure can also be performed after the patient has been anesthetized at home and during transportation to the hospital. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Institute of Medicine’s Report on Non-Heart-Beating Organ TransplantationRoger Herdman (bio), Tom L. Beauchamp (bio), and John T. Potts Jr. (bio)In December 1997, the Institute of Medicine (IOM) released a report on medical and ethical issues in the procurement of non-heart-beating organ donors. This report had been requested in May 1997 by the Department of Health and Human Services (DHHS). We will here describe the genesis of the IOM (...) report, the medical and moral concerns that led the DHHS to sponsor it, the process of producing it, and its conclusions. The analyses, findings, and recommendations of the report are also reviewed, in particular the central issues that led to suggestions for policy changes.Transplantation BackgroundAs a first step, some background in the relevant aspects of organ transplantation will prove useful. For the purposes of this analysis, “transplantation” involves the transfer of cells, tissues, or solid organs from one human to another to replace the structure or function of comparable body components that, through injury or disease, are defective or of inadequate function. The IOM report deals with solid organs, primarily kidneys and livers, whose blood supply is reconnected in the organ recipient, in contrast to cells, like bone marrow, and tissues, like corneas. A variety of donor types exists for organ transplantation, each with particular medical and scientific conditions.Living donors are healthy (and usually genetically related) individuals who volunteer to provide either a whole, paired organ such as a kidney or a section of an organ such as a liver. Cadaver donors are individuals who have died and from whom a full array of organs can be taken. “Heart-beating” cadaver donors are individuals who have suffered “brain death,” that is, irreversible cessation of function of the whole brain including the brain stem; and “non-heart-beating” donors (NHBDs) are individuals who are ill or injured, but not “brain dead,” and who have suffered cardiopulmonary death, that is, irreversible cessation of cardiac and respiratory function. NHBDs can be “controlled,” which means that [End Page 83] they can be sustained by artificial life support systems until a medical and family decision is made to terminate futile life support. This can be done at a scheduled time and in a controlled manner, and organs can then be recovered for transplantation. NHBDs can also be “uncontrolled,” which means that their hearts and breathing have stopped through disease or injury at an unexpected time or in an uncontrolled manner, and they cannot be resuscitated; the organs of some individuals of this description can be recovered for transplantation. The IOM report focused on both controlled and uncontrolled NHBDs and on problems specific to them.The questions that were asked and addressed in the IOM report became current and salient beginning in 1992 with the establishment of the University of Pittsburgh “Policy for the Management of Terminally Ill Patients Who May Become Organ Donors After Death.” This policy addressed controlled NHBDs and the ethical questions raised by their use; much of the discussion was reported in the June 1993 special issue of the Kennedy Institute of Ethics Journal. Public notice and anxiety about some of these concerns were sharpened and refocused by national and local media allegations of improper treatment of donors at the Cleveland Clinic in 1997, specifically premature—i.e., antemortem—recovery of organs and administration of drugs that allegedly might hasten donor death.The DHHS Request for StudyIt is not surprising that several federal actions would be taken in response to these events. Some, such as the results of a transplantation task force, remain largely internal to DHHS at this writing. Others are public, such as the IOM study of the NHBD situation. In May 1997, the DHHS initiated contacts with the IOM with the goal of exploring federal concerns about the medical and ethical treatment of NHBDs, in particular the allegations directed at the Cleveland Clinic.The DHHS response should be understood in at least three contexts. First, living donors and uncontrolled NHBDs were essentially the only donor types in the early days of transplantation in the United States. The technologies, ethics, and social acceptance of controlling and terminating life support for... (shrink)

There is a conflict between the wishes of terminally ill patients to allow withdrawal of treatment and become donors after cardiac death (DCD) and the limit on interventions required by the dead-donor rule (DDR). Once a breathing tube is removed, hours can pass before the patient expires. This interim time complies with the DDR, but often makes donation impossible. The consequences are the nullification of donors’ wishes and the waste of organs for transplantation. Since the DDR was developed, attitudes (...) on end-of-life interventions have evolved, organ donation has been embraced, and the field of organ transplantation has been firmly established. A new ethical approach is needed that, based on patients’ autonomy, considers organ donation a goal of care and views the donated organs as having a profound value for the donor and recipient. It is time to prioritize patients’ autonomous desire to donate life-giving organs to others and thus promote continuity of care for the donated organs over the modality of death pronouncement. To support patients’ desire to be organ donors, the conversation should be open to allow medical intervention in the peri-extubation period. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Working with Patience:An Insight into Dealing with Difficult EmotionsDavid VilanovaAs the most trusted professionals in the nation, nurses are expected to care for their patients with empathy and freedom from bias. The reality is that nurses are human, and some form of implicit bias is inevitable. In my own experience, this issue has reared its head on several occasions. My nursing background is prominently in cardiac and intensive (...) care. Seeing patients at their most vulnerable has become a regular part of my practice. Among some of the most challenging cases for me have been when I assume care of a patient withdrawing from alcohol. As an adult child with close alcoholic family members, many instances of abuse and pain stick with me today and these are brought to the surface when I care for patients with alcohol use disorder. In most cases, I easily find a healthy balance between remaining an understanding-and-empathetic provider and protecting my emotional and mental health as I navigate ethical and moral issues. However, with this patient population, walking that fine line is especially challenging. How do I navigate and manage intensely personal emotions and biases while providing the high-quality care I vowed to deliver regardless of my patient's life choices, addictions, and illnesses? How do I maintain an appropriate level of neutrality and clarity as this patient's behavior and attitude spark emotional triggers? In other words, how do I take care of someone I don't like?Mrs. H was a middle-aged Hispanic woman, barely coherent, but speaking clearly enough that I could understand her slurred speech. Immediate dread washed over me as I realized my assignment included a patient withdrawing from alcohol. The patient's affect, incoherence, and aggression were all too reminiscent of a traumatic past I still work to heal from. My coworkers couldn't understand her insults and obscenities and were therefore unphased except for noting her unruly and erratic behavior. On the other hand, I could understand much of what she was yelling at me and any other staff who bravely walked into her room. My immediate thoughts were that this woman clearly did not want our help. My every attempt to enter her room, speak with her, and provide care were met with an all too familiar rejection and denial that she even had a problem. Yet here she was in a hospital room, and I was her nurse. She verbalized denial of drinking too much when told that she was being treated for alcohol withdrawal. She stated this denial more to herself than to the health care providers in the room, and it was reminiscent of the denial I have seen in my loved ones. This was ironic, I always thought, as the need for such self-deception in and of itself points to the fact that something may be wrong and worth addressing.But denial or not, today, this patient—Mrs. H, was entrusted into my care. She refused treatments and medications, and this put me in a complex ethical predicament—treating a patient that I do not like for the personal issues she reminds me of, and the treatment of a patient against their refusal, as she was deemed incapable of making her own decisions. The latter of these two issues was easiest to put aside. Legally, this patient needed to be treated through her alcohol withdrawal. Once her mental status cleared up, she could sign out against medical advice or choose to remain until a safe discharge plan was in place. There was a protocol and legal guidelines for this situation. However, no guidelines [End Page 10] truly exist when it comes to the management of a patient that you simply do not like. The result can be a near-instantaneous dread each time you must answer that patient's bed alarm, call light, or most basic needs. A negative bias takes over, and it would be an understatement to say that this affects the quality of care. Patients in situations like this—with providers who judge them as I have been guilty of—can easily become subject to derogatory remarks, health inequities, and biased labeling... (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)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Good Work: Christian Ethics in the Workplace by Esther D. ReedWilton BunchGood Work: Christian Ethics in the Workplace Esther D. Reed Waco, TX: Baylor University Press, 2010. 132pp. $18.96Work has become a political football. There are laws defining who can work and who cannot. And there are laws that stipulate who can receive and who is eliminated from what were formerly standard benefits. There are even laws, as (...) in the state of Alabama, that define what work ministers can do for the poor, the needy, and those who are ill. Given the many issues affecting what occurs in workplaces—where most working people spend most of their time—there is a need for an integrated perspective on work. Esther Reed’s Good Work provides just that: a broader context for understanding the significance of our work.Many people understand “work” to be the energy they expend in order to receive something they can then spend. Such an understanding of work, Reed observes, reflects the assumptions of a capitalist society in which people are valued in terms of what they do and how much money they make. From this standpoint, cardiac surgeons are valued much more highly than garbage collectors, even though societies could not function without garbage removal but did, in fact, survive for centuries before cardiac surgeons. In a similar vein, in the supposedly egalitarian halls of academe, the grossly underpaid adjunct professor is dismissed and discounted even though she spends much more time with students than does her tenured counterpart. [End Page 196]Yet there are other ways of defining work. Reed reminds us that the same Hebrew word translated as “hard work” (‘abad) can also mean priestly service in the Tabernacle (12). The work (or liturgy) of tabernacle worship was understood to be service to God. Likewise, Jesus described his ministry as work and even spoke of the Father as still working: “My Father is still working, and I also am working (Greek ergazetai/ergazomai; John 5:17)” (13). The work of Jesus and his Father had to do with salvation and blessing for human beings. From this standpoint, work clearly has a spiritual dimension.The framework Reed develops for establishing a Christian ethic of work is rooted in the resurrection of Jesus Christ from the dead. What we say about work, she contends, will depend on what we say about the resurrection. Indeed, she argues, reflection on the resurrection can orient (or reorient) the working lives of Christian in important ways (2). An understanding of work rooted in the resurrection, Reed argues, is cultivated by participating in the liturgy of a worshipping community. Many Christian liturgies begin with praise to God for the salvation that comes through Jesus Christ. By beginning worship in this way, the community is able to concentrate on a kind of work that enables them to go beyond their individual lives and become part of something larger—a community in praise of God. In turn, the bread and wine that is blessed during the Eucharistic celebration contains not only the fruits of creation but also the fruits of human labor. As the Spirit of God infuses the bread and wine with the presence of Jesus Christ, crucified and raised from the dead, it also sanctifies our labor. And as we receive the bread and wine, and as we meditate on Christ’s passion and resurrection, we become hungry for enacting justice and mercy in all realms of our lives—including the realm of work. Indeed, through this encounter with the Triune God and with one another in worship, we gain a renewed appreciation of who we are as human beings. More profoundly, we become those who can, in fact, not only work and love but also—through the Spirit’s power—renew everything we do and encounter, including the curse of work.Central to Reed’s argument is the claim that work entails a dimension of justice. Persons have rights to work and to rest because they are created in the image of God, which means they have intrinsic worth. Such rights, she argues, must be closely linked with liberties that are understood not merely negatively... (shrink)

Background: Identifying, maintenance, and promotion of dignity in different patients of various cultures is an ethical responsibility of healthcare workers. Research questions: This study was conducted to investigate factors related to dignity in patients with heart failure and test the validity of Dignity Model. Design: The study had a descriptive-correlational design, and data collection was carried out by means of four specific questionnaires. Participants and context: A total of 130 in-patients from cardiac wards in hospitals affiliated with Tehran and (...) Shahid Beheshti University of Medical Sciences participated. Ethical consideration: This study was approved by the Research Committee of Shahid Beheshti University of Medical Sciences. Findings: Significant correlation showed the following: between illness related worries with dignity conserving repertoire score, between illness related worries with social dignity, between illness related worries with dignity conserving repertoire score, and between social dignity with dignity score. Goodness Fit Index and Comparative Fit Index were calculated greater than 0.9. Discussion: This study affirms the importance of careful evaluation of individual patients to determine their needs related to dignity. Conclusion: According to the results, the necessity of using appropriate tools to assess various aspects of patients’ dignity by clinical healthcare staff and design activities with particular focus on the main factors affecting dignity such as illness related worries and social dignity is recommended. Attention to this issue in everyday clinical practice can facilitate health professionals/nurses to potentially improve their patients’ dignity, develop quality of care and treatment, and improve patients’ satisfaction. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Side Stepping The Issues: Disappointment With An Ethics Consult For A Medically High Risk PatientBrent R. CarrMonths of severe symptoms were a blur—hour after hour of suffering. Sleep is her only respite. Her 5-word diagnosis, “treatment-refractory depression with anxious distress,” seemed too orderly, like a flattened 2-dimensional strip of ribbon that simply ironed out all the chaos and confused distress roiling within her. Anyone entering the psychiatric unit early (...) in the morning could hear her near-breathless sobbing, calling for nursing help, repeatedly pleading to anyone who would listen that she was dying. By afternoon, her wheelchair would be situated off to one side of the milieu to prevent agitation of other [End Page 13] patients. From there, she would summon them with small gestures or brief, incessant outbursts to save her, that her body was decaying, withering before them. Such is the torment of nihilistic delusions. She flailed her arms, rocking back and forth, lamenting that no one would help. Although she possessed full leg strength, she refused to stand from the wheelchair, fearing collapse. These distressed pleas were sustained well past each dinner, the anguish echoing from her room, and during her evening shower. Sometimes a pillow-muffled sigh and silence would disclose when her torments became engulfed in sleep.Two years prior, she had a similar episode that lasted almost 3-years. It had failed to respond to months of psychotherapy and more than 15 medication trials. That time, she had cried with happiness after the mental illness went into full remission after only a three-week course of electroconvulsive therapy (ECT). She described this as her miracle. But as miraculous as the ECT was for her, it was problematic. She is a high-risk patient with ongoing hypertension and Wolff-Parkinson-White Syndrome, a condition that leads to an inappropriately fast pulse from aberrant electrical pathways in the heart. During the final week of ECT, she experienced a marked blood pressure surge that led to severe cardiac pathology—Takatsubo’s cardiomyopathy. This is also known as “stress cardiomyopathy” or “broken heart syndrome,” befitting the vexed emotional state she had been in. The cardiomyopathy resembled a myocardial infarct, and it took several months for her to fully recover. Unfortunately, this prevented the use of ECT as a relapse prevention treatment. By one-year post-ECT, her systolic left ventricular dysfunction had resolved, and her ejection fraction (the heart’s pumping efficiency) had normalized.Now, once again, she was treatment-resistant, and ECT was the treatment of choice. The risk stratification for ECT encompassed her prior Takatsubo’s cardiomyopathy, which has a small but known chance for recurrence. This made her a high-risk patient. This risk was convoluted even more by her depression-induced psychosis, wherein she believed that she was dying, that meds were poisoning her, and that ECT would kill her from a heart attack. Before the psychiatric team consulted the ECT service, a mental health court had already ruled regarding her lack of capacity for her medical decisions. The court had authorized her husband as her proxy with authority to consent for her medical care, including for ECT. My role in this case was as the ECT proceduralist from the neuromodulation service who had been consulted by the primary team. The husband was an informed individual and signed consent for ECT. These events all coincided with the primary attending’s departure on scheduled leave. There was now a new covering attending.The resident psychiatrist was apprehensive about ECT and deliberated that the patient was at least able to identify potential risks of ECT—even if exacerbated by a nihilistic delusion. The resident speculated that perhaps the patient should at least be able to refuse ECT, given her previous cardiomyopathy. The newly arrived attending deferred a response regarding her concern and stated it had already been decided by the “team.” This amplified doubt. The medical students sensed the resident’s apprehension and felt confused about whether the patient should receive ECT or not. This dynamic quickly spilled over into nursing discussions, where some were now hesitating about the decision. The cohesiveness of the psychiatry treatment team was compromised... (shrink)

From a twenty-first century partnership between bioethics and neuroscience, the modern field of neuroethics is emerging, and technologies enabling functional neuroimaging with unprecedented sensitivity have brought new ethical, social and legal issues to the forefront. Some issues, akin to those surrounding modern genetics, raise critical questions regarding prediction of disease, privacy and identity. However, with new and still-evolving insights into our neurobiology and previously unquantifiable features of profoundly personal behaviors such as social attitude, value and moral agency, the difficulty of (...) carefully and properly interpreting the relationship between brain findings and our own self-concept is unprecedented. Therefore, while the ethics of genetics provides a legitimate starting point - even a backbone - for tackling ethical issues in neuroimaging, they do not suffice. Drawing on recent neuroimaging findings and their plausible real-world applications, we argue that interpretation of neuroimaging data is a key epistemological and ethical challenge. This challenge is two-fold. First, at the scientific level, the sheer complexity of neuroscience research poses challenges for integration of knowledge and meaningful interpretation of data. Second, at the social and cultural level, we find that interpretations of imaging studies are bound by cultural and anthropological frameworks. In particular, the introduction of concepts of self and personhood in neuroimaging illustrates the interaction of interpretation levels and is a major reason why ethical reflection on genetics will only partially help settle neuroethical issues. Indeed, ethical interpretation of such findings will necessitate not only traditional bioethical input but also a wider perspective on the construction of scientific knowledge. (shrink)

In October 2022, I had the privilege of joining Hank Greely on the opening panel of the annual International Neuroethics Society (INS) meeting in Montréal, Tiohtiá:ke, situated on the traditional t...

In Phillip Kerr’s 1994 spellbinding novel A Philosophical Investigation, the medical test to which the protagonist refers is a functional brain scan based on positron emission tomography. It is used to run large studies of male and female brains and, following a lead suggested by animal studies, has been used to identify rare cases of human male subjects who lack the ventral medial nucleus. This nucleus, in the experiment, is hypothesized to inhibit the activity of the sexually dimorphic nucleus, a (...) preoptic area of the male brain believed to be a repository of male aggressive response. Prior research, we learn from the plot, shows that 3 in 100,000 human males are VMN-negative. Thirty percent of those affected are believed to be in prison or to have a criminal record; 70% are believed to stabilize levels of aggression by producing increased levels of estrogen. Identities of subjects participating in the brain scan studies are protected through the conversion of real names to those of famous figures of the past — Bertrand Russell, Charles Dickens. Those for whom results are unfavorable are recontacted, and they are offered counseling. (shrink)

In proportion to other serious illnesses, diseases of the brain and mind represent the greatest—and still increasing—public health burden that Western societies are facing. Consequently, scientists, governments, advocacy groups, and public health authorities are committed to research to tackle the causes and consequences of neurological and psychiatric diseases and to find cures for them. As neuroscience research progresses, ethicists and neuroscientists face numerous ethical challenges to the integration of frontier application of research—neurotechnology—with the delivery of high-quality healthcare. In this special (...) neuroethics issue, we have invited distinguished scholars with diverse disciplinary backgrounds to present their reflections and research on the ethical dimensions of this crucial integration. (shrink)

This paper was inspired by William Holman Hunt’s Pre-Raphaelite painting, The Light of the World.https://www.keble.ox.ac.uk/about/chaptel/Light%20of%20the%20world%202.JPG/view. It is a well-known Victorian oil painting with rich symbolism. In this essay I outline the context, describe the painting and reflect on the role of spirituality and contemplation in one’s work and personal life. I offer autoethnographic illustrations and argue that spirituality and contemplation make a positive contribution to wellbeing and can support one’s search for meaning, purpose and connectedness in the world.