The paper discusses inappropriate (futile) treatment by analyzing the casuistics of palliative patients in the terminal stage of illness who are hospitalized at the Department of Internal Medicine and Geriatrics of the Faculty hospital with policlinic (FNsP). Our research applies the principles of palliative care in the context of bioethics. The existing clinical conditions of healthcare in Slovakia are characteristic of making a taboo of the issues of inappropriate treatment of palliative patients. Inductive-deductive and normative clinical bioethics methods of palliative (...) care and ethical strategy are applied for defining issues found in inappropriate hemodialysis treatment. An algorithm of hemodialysis treatment requires the definition of those lege artis criteria which, in the context of a patient’s autonomy and his/her decision, precondition the avoidance of the situation in which hemodialysis treatment is inappropriate (futile). Futile treatment in a terminal condition is ethically inappropriate medical treatment that extends the suffering of patients and their relatives. Its definition is determined by the relevant legislation and the methods of bioethics. An active palliative strategy is aimed at managing the process of incurable diseases in the patient’s bio-psycho-socio-spiritual continuity in the process of special bioethics. The global bioethical objective of general bioethics for palliative care is based on the paradigm of social harmony and solidarity in the context of an authentic modus of the patient’s existence as a constitutive principle for the phenomenon of the patient’s being to finite being (death). (shrink)

An estimated 6,500 undocumented immigrants in the United States have been diagnosed with end-stage renal disease. These individuals are ineligible for the federal insurance program that covers dialysis and/or transplantation for citizens, and consequently are subject to local or state policies regarding the provision of healthcare. In 76% of states, undocumented immigrants are ineligible to receive scheduled outpatient dialysis treatments, and typically receive dialysis only when presenting to the emergency center with severe life-threatening symptoms. ‘Emergency-only hemodialysis’ is associated with (...) higher healthcare costs, higher mortality, and longer hospitalizations. In this paper, we present an ethical critique of existing federal policy. We argue that EOHD represents a failure of fiduciary and professional obligations, contributes to moral distress, and undermines physician obligations to be good stewards of medical resources. We then explore potential avenues for reform based upon policies introduced at the state level. We argue that, while reform at the federal level would ultimately be a more sustainable longterm solution, state-based policy reforms can help mitigate the ethical shortcomings of EOHD. (shrink)

The aim of this study is to explore how nurses perceive patient participations of patients over 75 years old undergoing hemodialysis treatment in dialysis units, and of their next of kin. Ten nurses told stories about what happened in the dialysis units. These stories were analyzed with critical discourse analysis. Three discursive practices are found: (1) the nurses’ power and control; (2) sharing power with the patient; and (3) transferring power to the next of kin. The first and the (...) predominant discursive practice can be explained with an ideology of paternalism, in which the nurses used biomedical explanations and the ethical principle of benefice to justify their actions. The second can be explained with an ideology of participation, in which the nurses used ethical narratives as a way to let the patients participate in the treatment. The third seemed to involve autonomous decision-making and the ethical principle of autonomy for the next of kin in the difficult end-of-life decisions. (shrink)

The prevalence of cognitive impairment in hemodialysis patients is extremely high. Despite the well-documented benefits of interventions on cognitive function, there is a widespread call for effective strategies that will show the long-term consequences in patients undergoing dialysis. The aim of this research protocol was to investigate the effect of cognitive training combined with physical exercise on cognitive function, physical performance, and frailty indicators in the HD population. We will conduct a randomized controlled intervention trial to examine the effects (...) of a combined non-pharmacological intervention in the form of intradialytic physical exercise and intradialytic cognitive training on cognitive function, indicators of frailty, and physical performance measures in HD patients. The group of patients receiving the study intervention will be compared to the control group receiving standard HD care. The duration of the intervention will be 12 weeks. We will use sensitive instruments to assess cognitive functions. The primary outcome of the study at 12 weeks will be performance on the Alertness subtest of the computerized Test of Attentional Performance. Secondary study outcomes are: Performance in other domains of cognitive function, physical fitness, and assessment of frailty. Study outcomes will be assessed at baseline, immediately after the 12-week intervention, and 6 months after the end of the study without specific further intervention. This study will be among the first to test the synergistic effects of a uniquely designed physical exercise and cognitive training intervention on functional status in HD patients. We believe our results will contribute to dementia prevention research by demonstrating the long-term efficacy of our combined intervention.Clinical Trial Registration:ClinicalTrials.Gov, NCT05150444. (shrink)

Renal replacement therapy is the indicated treatment for individuals with chronic kidney disease (CKD) to survive. However, not all sick people have access to the same treatment. This study compares renal care in two developing countries with different health systems. Specifically, it explores hemodialysis treatment from the perspective of low‐income individuals. A qualitative, comparative study was performed in Brazil and Mexico. Using purposive sampling, the research was based on open‐ended interviews with nineteen participants with kidney failure undergoing hemodialysis (...) treatment in public hospitals and ten relatives. According to our results, Brazilian participants perceived hemodialysis care as satisfactory because of health personnel courtesy as well as free access to dialysis treatment, prescription drugs, hospitalization and transportation. However, they reported deficiencies in the care they were receiving due to shortages of specialists, prescription drugs, laboratory tests and transportation. Mexican participants, in contrast, highlighted the catastrophic costs of medical care because they had no free access to renal therapy, nor adequate financial resources. Our findings suggest that low‐income Brazilian CKD sufferers experience renal care differently, as they are more satisfied and face less obstacles with hemodialysis compared with those of Mexico. More studies on the topic are needed. (shrink)

ObjectiveTo investigate the instant impact of hemodialysis on the cerebral morphological measurements of patients with end-stage renal disease.Materials and methodsTwenty-five patients undergoing maintenance HD and twenty-eight age-, sex-, and education-matched healthy control were included. The HD group and HC group had 3D high-resolution structural magnetic resonance imaging scans twice and once, respectively. Both groups underwent neuropsychologic tests. The morphological measurements of structural MRI were measured using CAT12 and these measures were compared among three groups. The relationship between morphological measures (...) and clinical parameters and neuropsychological tests were investigated through multiple regression analysis.ResultsCompared to the HC group, the cortical thickness before HD significantly decreased in the bilateral temporal lobe and significantly decreased in the left superior temporal gyrus after HD. The cortical thickness significantly increased in the bilateral temporal lobe, frontal lobe and occipital lobe after HD compared to before HD. The sulcus depth in the bilateral insula, frontal lobe, and parietal lobe after HD significantly increased compared to before HD. No significant differences in sulcus depth between HD and HC were detected. After HD, the cortical thickness of the right parsopercularis was positively correlated with the number connection test-A. Cortical thickness in multiple regions were positively correlated with blood flow velocity and cortical thickness in the left parahippocampal gyrus was negatively correlated with ultrafiltration volume. Patients showed better performance in the digit symbol test and line tracing test after HD compared to before HD, but there were no significant differences in the comparison of neuropsychologic tests between patients and HC.ConclusionThe instant morphological changes were captured during a single hemodialysis in HD patients. There was an association between these instant changes in the brain and clinical parameters and neuropsychologic tests. This work implied the instant impact of a single hemodialysis impact on the brain in HD patients. (shrink)

BackgroundThis study is part of a major study about difficulties in communicating ethical problems within and among professional groups working in hemodialysis care. Describing experiences of ethically difficult situations that induce a troubled conscience may raise consciousness about ethical problems and thereby open the way to further reflection.The aim of this study was to illuminate the meanings of being in ethically difficult situations that led to the burden of a troubled conscience, as narrated by physicians working in dialysis care.MethodA (...) phenomenological hermeneutic method was used to analyze the transcribed narrative interviews with five physicians who had varying lengths of experience in nephrology.ResultsThe analysis shows that physicians working in hemodialysis care suffered from a troubled conscience when they felt torn by conflicting demands and trapped in irresolution. They faced ethical dilemmas where they were forced to make crucial decisions about life or death, or to prioritize when squeezed between time restraints and professional and personal demands. In these ethical dilemmas the physicians avoided arousing conflicts, were afraid of using their authority, were burdened by moral responsibility and felt devalued and questioned about their way of handling the situation. The findings point to another way of encountering ethical dilemmas, being guided by their conscience. This mean sharing the agony of deciding how to act, being brave enough to bring up the crucial problem, feeling certain that better ways of acting have not been overlooked, being respected and confirmed regarding decisions made.ConclusionThe meanings of being in ethically difficult situations that led to the burden of a troubled conscience in those working in hemodialysis care, indicate the importance of increasing the level of communication within and among various professional groups - to transform being burdened by a troubled conscience into using conscience as a guide - in situations where no way of solving the problem seems to be good. (shrink)

The aim of this study, which is a field reseach, is to determine the level of religiosity and subjective well-being (SWB) of patients with chronic renal failure who are receiving hemodialysis treatment with a descriptive approach and by using socio-psychological methods and to try to determine the relationship between their religiosity and subjective well-being. The sample of the study consists of 205 individuals who were determined by stratified random sampling method from the patients treated in Turkish Ministry of Health, (...) Hitit University Çorum Erol Olçok Training and Research Hospital and Çorum District Dialysis Units. 54.1% (n=111) of the participants are males and 45.9% (n=94) are females. Data was collected via a “Religiosity Inventory”, developed by Kula, and “Subjective Well-Being Scale”, developed by Dost, to determine participants’ religiosity and subjective well-being as well as a personal information form to determine demographic characteristics. Statistical analysis of the data showed significant differences and relationships between demographic variables, religiosity, and subjective well-being. Moreover, a statistically significant relationship between the levels of religiousness and subjective well-being of the participants was found and that religiosity accounts for 31.9% of subjective well-being variance. The findings of the study show that the major hypotheses and sub-hypotheses have statistically been validated and that religiosity is a significant and important predictor of subjective well-being.Summary: Throughout history, existential questions and the answers sought for these questions have remained important for human beings. Human beings have always wondered about life, meaning of life, death, after death and pursued meaning systems that will satisfy this curiosity. While various thinkers and philosophers put forward opinions about the secrets of life; religion has presented the transcendent dimension to the individual as a source of meaning. Thus, the individual has found the definitive answer to many of his questions about existence in religion, and this sense of certainty has contributed positively to his psychological well-being. However, human beings may also face disasters, diseases or adversities in the natural flow of life and sometimes unexpectedly, such situations make them desperate. Desperation creates a feeling of loneliness in the person and this can trigger a sense of meaninglessness for him. The feeling of vacuum in the inner world of the individual who struggles with difficulty or the sense of meaninglessness somehow affects his subjective well-being.From this perspective the subject of the study is the effect of religiosity levels on subjective well-being of individuals who are struggling with chronic renal failure and have experienced a compelling treatment process such as hemodialysis. The aim of this study is to determine the level of religiosity and subjective well-being of these patients. The sample of the study consists of 205 individuals who were determined by stratified random sampling method from the patients treated in Turkish Ministry of Health, Hitit University Çorum Erol Olçok Training and Research Hospital and Çorum District Dialysis Units.The major hypothesis of the study is “The religiosity levels of hemodialysis patients have a significant effect on their subjective well-being.” Further sub-hypotheses are as follows: 1. Women’s religiosity is higher than men’s. 2. There is a significant relationship between the perception of subjective happiness and religiosity levels of the participants. The subjective happiness perception levels of the individuals with high religiosity scores are also high. 3. There is no significant difference between the SWB levels of the participants according to gender variable. 4. There is a significant relationship between the perception of subjective religiosity and SWB levels of participants. According to this; subjective well-being increases as the person’s self-religious perception levels increase.5. There is a significant positive relationship between the religiosity scores of the participants and SWB scores. 6. Religiosity is a significant predictor of subjective well-being. Thus; the SWB level is expected to increase as the religiosity scores increase.The data of the study was obtained by using Personal Information Form prepared by the researcher, Kula’s Religiosity Inventory and Dost’s Subjective Well-Being Scale. The study was conducted in hospitals. After getting the necessary legal permissions and consent of the patients, the patients were informed about the study and the study was conducted on a voluntary basis. The questionnaires were applied by the researcher in person through face-to-face interviews with patients in hospitals, sometimes on weekdays and sometimes on Saturdays. Together with the physician of the hemodialysis unit, district hospitals were visited to reach the target group receiving treatment in these districts.In accordance with the relational screening model, the data of the study was analyzed with SPSS 16.0 package program. The mean (x̄) and standard deviation (ss) scores of the Religiosity Inventory and Subjective Well-Being Scale were calculated according to independent variables and tables were created. The significance of the difference between the two means obtained from two independent sample groups was determined by independent samples t-test for independent samples. One-way Varayns analysis (ANOVA) was used to test hypotheses about whether there was a difference between the means of more than two sample groups. In case of significant differences between means, LSD test and Tamhane’s T2 test from post-hoc multiple comparison tests were usedand the direction of the differences were determined as such. To determine the relationship between two continuous variables, religiosity and subjective well-being, Pearson Moments Correlation Analysis technique was used, and Simple Linear Regression analysis was performed to determine how much religiosity explains the changes observed in the dependent variable. The significance of the obtained statistics was tested at 0.05 level and bidirectional and the analysis values were presented in sequential tables in accordance with the purpose of the research. It is possible to summarize the findings of the study as follows:• 45.9% (n=94) of the sample are women and 54.1% (n=111) are men. According to subjective evaluations, 55.6% of the sample considers themselves as happy and very happy and 79.5% defines themselves as religious and very religious. According to the findings, subjective religiosity perception is higher in patients than subjective happiness perception. • The sample group has a high level of religiosity ( x̄ =4,3713).• There is a significant difference between gender and general religiosity (t=2,933; p=,004; p 0.05). However there is a difference in the SWB averages of male and female participants, women scored higher (x̄=3,8309) in SWB than men (x̄=3,7135). • A significant relationship has been found between subjective religiosity perception and SWB level of the sample (F=12,345; p=,000, p<0.05). SWB levels increased with increasing subjective religiosity. Further, there is a significant relationship between “slightly religious” (x̄=3,3439), “religious” (x̄=3,7737) and “very religious” (x̄=4,1363) groups and SWB level. There is also a steady increase in the mean scores of SWB from “not at all religious” to “very religious”. • A positive and moderately significant relationship has been found between general religiosity and general SWB (r=,565, p<0.01). • According to the results of regression analysis to determine whether total religiosity in HD patients is a significant predictor of subjective well-being; religiosity explaines 31.9% of the variance in subjective well-being. This result shows that one of the important determinants of SWB in HD patients is religiousness. Religiosity is a significant and important predictor of subjective well-being, and increased religiosity directly affects the SWB levels of HD patients. In addition, the basic hypothesis and sub-hypotheses were validated statistically at the end of the study. (shrink)

Objective: Cognitive impairment is a common neurological complication in patients with end-stage renal disease undergoing maintenance hemodialysis. Brain network analysis based on graph theory is a promising tool for studying CI. Therefore, the purpose of this study was to analyze the changes of functional brain networks in patients on MHD with and without CI by using graph theory and further explore the underlying neuropathological mechanism of CI in these patients.Methods: A total of 39 patients on MHD and 25 healthy (...) controls matched for age, sex, and years of education were enrolled in the study. Resting-state functional magnetic resonance imaging and T1-weighted high-resolution anatomical data were obtained, and functional brain networks for each subject were constructed. The brain network parameters at the global and regional levels were calculated, and a one-way analysis of covariance was used to compare the differences across the three groups. The associations between the changed graph-theory parameters and cognitive function scores in patients on MHD were evaluated using Spearman correlation analysis.Results: Compared with HCs, the global parameters [sigma, gamma, and local efficiency ] in both patient groups decreased significantly. The clustering coefficient in patients with CI was significantly lower than that in the other two groups. The regional parameters were significantly lower in the right superior frontal gyrus, dorsolateral and gyrus rectus of patients with CI than those of patients without CI; however the nodal local efficiency in the left amygdala was significantly increased. The global Cp and regional parameters in the three brain regions were significantly correlated with the cognitive function scores.Conclusion: This study confirmed that the topology of the functional brain network was disrupted in patients on MHD with and without CI and the disruption of brain network was more severe in patients with CI. The abnormal brain network parameters are closely related to cognitive function in patients on MHD. (shrink)

Many young and middle-aged maintenance hemodialysis patients suffer a poor prognosis, experience a series of problems during long-term treatment and are thus prone to stigma. This study was designed to analyze stigma in young and middle-aged maintenance hemodialysis patients and explore its influencing factors. This study was conducted as a cross-sectional descriptive study with a convenience sampling method and included 97 patients from Shanghai Jiao Tong University Affiliated Sixth People’s Hospital between November 2020 and February 2021. The Social (...) Impact Scale, a demographic questionnaire, and hemodialysis indicators were used in the investigation. Patient biochemical indexes from hemodialysis were compared. Young and middle-aged maintenance hemodialysis patients had a medium level of stigma. Patients who had low income, were younger, were male, had long-term hemodialysis and were unemployed had significantly higher stigma scores than other patients. Age, gender, occupational status, annual household income and the duration of hemodialysis were found to be the main factors related to stigma in young and middle-aged maintenance hemodialysis patients by multiple regression analysis. Perceptions of hemodialysis-related stigma were common in our sample. Patients who had low income, were younger, were male, had long-term hemodialysis and were employed had a higher level of stigma, which deserves attention from clinical medical workers. Replication studies are needed to confirm these findings. (shrink)

Written by a sociologist and a biologist and science historian, this text considers the social aspects of organ transplantation and chronic hemodialysis. Their research, begun in 1968, focused on the experience of research physicians engaged in this work, the "gift- exchange" social dimensions of these practices, and the impact of these technologies on society as a whole. This reprint of the 1978 edition includes a new introduction by the authors. c. Book News Inc.

Successful formulation and implementation of end-of-life care requires ongoing communication with the patient. When patients, for reasons of general medical or psychiatric illness, fail to verbally communicate, providers must be receptive to messages conveyed through alternate avenues of communication. We present the narrative of a man with schizophrenia who wished to forgo hemodialysis as a study in the ethical importance of attention to nonverbal communication. A multilayered understanding of the patient, as may be provided by both behavioral and motivational (...) models, can inform the provider’s ability to receive, process, and represent communicated content to the patient or his or her surrogate decision-maker. (shrink)

Across the world, healthcare providers must wrestle with the twin ogres of finite resources and infinite demand. Successful healthcare delivery creates its own legacy of need. For example, a renal failure patient may now be given a greatly extended life by means of dialysis or organ transplantation. In the process, the healthcare provider has created a permanent demand for services during that extended life. It has been estimated that the recurrent cost of maintaining a patient on hemodialysis for 1 (...) year in the United Kingdom is in the region of £20,000. (shrink)

Medical decision making often utilizes subjective observations to arrive at concrete judgments. The decisions frequently affect who receives scarce medical treatments and, thus, who lives or dies. In this paper, a model health status index is described. It is specific for the problem of choosing patients for hemodialysis or transplantation. Such a health status index may be designed for any medical decision involving such issues as drug treatment priorities, identification of salvageable patients, and selection of patients for scarce medical (...) treatment. This index (1) incorporates a physician''s own medical criteria and values, (2) can be modified as the data base improves, (3) assures consistency from decision to decision, and (4) can be developed and used without the help of a mathematician or computer. (shrink)

Rereading Renée C. Fox's “A Sociological Perspective on Organ Transplantation and Hemodialysis,” published in 1970, one is likely to be struck more by continuity than by change. The most pressing of the social, policy, and ethical concerns that Fox raised remain problematic fifty years later. We still struggle with scientific and clinical uncertainty, with the boundary between experimentation and therapy, and with the cost of organ replacement therapies and disparities in how they are allocated. We still have an imperfect (...) understanding of transplant immune responses. We still debate when a potential donor “actually” dies, and we still seem to think better empirical criteria could harmonize the diverse religious, cultural, and socioeconomic values of patients, providers, third‐party payers, and policy‐makers. Organ transplantation was for Fox both a particular case unfolding in time and an entryway for discussing the difficult moral questions presented by many new medical technologies in a context of high demand and limited resources. (shrink)

Situations in which patients lack medical decision-making (MDM) capacity raise ethical challenges, especially when the patients decline care that their surrogate decision makers and/or clinicians agree is indicated. These patients are a vulnerable population and should receive treatment that is the standard of care, in line with their the values of their authentic self, just as any other patient would. But forcing treatment on patients who refuse it, even though they lack capacity, carries medical and psychological risks to the patients (...) and the hospital staff. It is also often impractical to force some treatments, especially in the long term. For example, independent of the ethical “should” question, how would one force hemodialysis for the rest of a patient’s life, or force a surgery that requires weeks of post-operative physical therapy? In this article we present a novel algorithm that can help clinicians with ethical and practical decision making, with the goals of achieving the best outcomes for patients and reducing moral distress for their caretakers and clinicians. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Receiving the Gift of Life: My Kidney Transplant StoryJudith W. RyanAs one of three siblings who all inherited an unfortunate gene from our mother, I was born with polycystic kidney disease (PKD). None of us knew of this, however, until later middle age, and my mother not until she was 76. I was the last sibling diagnosed at the age of 56. My brothers had been diagnosed some years (...) before and jokingly started to look at me as a universal donor. Since I had a 50-50 chance of having PKD and with a mother who was one of eight children with none of her siblings known to have the disease, I had not felt an urgency to be tested. Besides, I had no signs or symptoms. But now there was a reason. I made an appointment for a renal ultrasound and while having the procedure, I tipped the screen so that I could see the results. Although the technician was not happy with this, I was repaid with the view of my kidneys looking full of bubbles. Yes, our family was three for three in the genetic game of roulette.I knew immediately how I was going to navigate this health issue. As an adult nurse practitioner I had a very good understanding of what was to come. I knew my blood type “O” was the most common and would mean the longest wait for a deceased donor transplant, at least five years if I were lucky and only after enduring several years of progressing renal failure. In addition, I had cared for dialysis patients and watched my mother endure with difficulty both peritoneal and hemodialysis prior to her death a year before my diagnosis. Knowing I would not choose dialysis left me hoping for a miracle of a living donor or, more realistically, managing my disease as best I could until I died.The next step was managing PKD symptoms and issues as my kidneys continued to fail. One of the errors in my thinking during this time turned out to be that because I had two brothers who had the same disease and were ahead of me in their disease progression, I could follow their lead. It turned out that we manifested our disease very differently. My younger brother, who was diagnosed first, had to deal with significant pain from persistent cyst ruptures, monthly, biweekly then weekly. This continued even after his transplant until he had his native kidneys removed. The other two of us did not have to deal with cyst ruptures. Additionally, anemia was no problem for my younger brother but was for us older siblings. Significant fatigue and weariness were a problem for both of my brothers but not for me.And so it went, as we compared our blood test results, that the idea of a living donor entered the conversation. I knew this would be a problem for me because how do you ask people to consider being a donor? I had difficulty asking friends for a ride to the airport. This is where the grace and kindness of others and divine intervention enter [End Page 107] our story—word about our medical dilemma spread through the visibility of my younger brother, a minister in New England.Fortunately for me, my much beloved younger brother had dozens of people who wanted to be his donor. About 12 of these potential donors were actually tested before finding a match. One of his unmatched donors became the donor for my older brother (our first family transplant). Two years later, my other brother received his transplant. Three years later, after being told he was not a good match for my brother, this dear man came forward to be a possible donor for me. Hence, I got my transplant from an unused donor from my younger brother’s group. Overall, we had living donors from three different churches located within an hour of each other in New England. I even lucked out and acquired the minister of one of the churches as my donor. All three of us received kidneys over five years from living donors who did not know my older brother... (shrink)

Over the past year, our ethics service has had numerous consultations involving patients who use the emergency department for regular dialysis. Sometimes, they have access to outpatient hemodialysis that they forgo; other times, they've been “fired” from this kind of outpatient facility, and so the ED is their last option. In most of these cases, we're called because the patient is disruptive once admitted to the ICU and behavior plans haven't helped. But the call from a resident this March (...) 2020 morning was different, the patient had end‐stage renal disease and often missed hemodialysis, but he wasn't disruptive. “It's just that he comes in after using cocaine, and given scarcity with the coronavirus and ICU beds….” I have come to think that this is one of the more insidious effects of the pandemic: that there will be a resurgence of the view that some patients deserve health care by virtue of their compliant behavior and that those who are nonadherent don't. (shrink)

Since the early 1970s, Marcel Mauss’s Essai sur le Don, translated into English as The Gift in 1954, has been a standard reference in the social science and bioethical literature on the use of human body parts and substances for medical and research purposes. At that time, three social scientists—political scientist Richard Titmuss in the United Kingdom and sociologist Renée C. Fox working with historian Judith Swazey in the United States—had the idea of using this concept to highlight the fundamental (...) structure of the biomedical practices they were studying, respectively, blood donation, and hemodialysis and organ transplantation. The fact that these first applications of Mauss’s essay should emerge in English- rather than in French-speaking countries raises the question of what the translation of the essay, and notably of the word don as gift, may have to do with this fact. Reading Mauss in translation undoubtedly inspired a seminal approach to interpreting medical and research practices based on bodily giving. This article posits that something may have also been lost: a much broader concept of giving with unquestionable links to the Durkheimian concept of solidarity, which Mauss conceptualizes not only as an obligation but also as a liberty to give. (shrink)

A patient with a history of bipolar II disorder and endstage renal disease who required hemodialysis for five years abruptly wished to withdraw from dialysis on day seven of her hospital admission for a urinary tract infection. She had never discussed wishing to withdraw from dialysis prior to this hospital admission. She had experienced several symptoms of depression during her stay. Her desire to withdraw from dialysis treatment was discordant with her previously expressed desires, and the psychiatry team determined (...) that her judgment was likely altered by her depressive episode. Given her previous positive response to electroconvulsive therapy (ECT), the psychiatry team recommended that she receive ECT before she choose to withdraw from dialysis. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Helping a Muslim Family to Make a Life–and–Death Decision for Their Beloved Terminally Ill FatherBahar BastaniI live in a city in the Midwest with a population of around two million people. There are an estimated 2,000 Iranians living in this city, the vast majority of which belong to Shia sect of Islam. [End Page 190] However, the vast majority is also not very religious. Over the past two decades (...) that I have been living in this city, professionally in the capacity of a physician and university faculty at a school of medicine, and socially as one of the community leaders with a particular role in religious matters, I have acquired the trust of my community. Following one of my yearly routine travels to my homeland, Iran, I had just returned to work when I received a phone call from one of the Iranian community members. He informed me that his father was very ill and was hospitalized, and that the physicians had introduced the idea of stopping life support. The family was experiencing a significant emotional, moral and religious dilemma as to whether they could consent to this. I was requested by the patient’s children to help them make the right decision.I requested that the oldest son, who had called me, to ask the three other siblings and their mother to be present at the bedside of the patient that night, so that we could discuss the matters face–to–face. That same night, all requisite family members and myself gathered at the bedside of this 88–year–old husband and father, who had developed multi–organ failure, which commenced with an infection following a heart valve replacement, followed by bacteremia and sepsis. Moreover, the patient was hypotensive, had developed respiratory failure requiring intubation and artificial ventilation, and had also developed hematologic coagulation abnormalities secondary to sepsis. Because of the sepsis, hypotension, and multiple drugs, including antibiotics and vasopressors, his kidneys had also failed, and there was a need to start hemodialysis if his life was to be maintained. After speaking with the intensive care physicians who were taking care of this elderly gentleman, it became clear to me that further care was futile, and there was absolutely no hope for him to recover from his multiple organ failure. I presented all the facts that I had acquired to the family members, and expressed my own viewpoint that I agreed with those physicians and that further care of their beloved, terminally ill husband and father was futile and only extended his dying. My assurances made it easier for the family members, particularly for his four sons who were present, to come to the decision to withdraw life support. After I informed the intensive care physicians of the family’s decision, the patient was heavily sedated with morphine, and the intravenous fluids, antibiotics, vasopressors, and the ventilator machine were all stopped. Over the next several minutes, the patient developed agonal breathing, his blood pressure dropped to zero, and his heart stopped. During the last few minutes of his life, I held the hands of the family members, we all prayed Islamic prayers to bless his soul while departing from his body. The next day, I supported the family with funeral services that included the Islamic prayers for the dead, the ceremonial religious washing of the body of the deceased, and the ceremonial religious burial.The dilemma that this family faced was multi-factorial: (1) the children had spent all of their adult life in America, and were unfamiliar with Islamic end of life and funeral traditions; (2) they had been asked by their father’s physicians to make a decision regarding the withdrawal of life support, which posed a moral and ethical dilemma; (3) they did not know whether it was religiously acceptable to withdraw life support; and (4) they did not know what type of funeral service would be acceptable to the religious beliefs of their deceased father.My presence as a trusted community leader, physician and religious leader was reassuring to the family members that the decision to stop life support for their loved one with a terminal illness and multiple organ... (shrink)

People do not choose to suffer from catastrophic illnesses, but considerable human choice is involved in the ways in which the participants in the process treat and conduct research on these diseases. Catastrophic Diseases draws a powerful and humane portrait of the patients who suffer from these illnesses as well as of the physician-investigators who treat them, and describes the major pressures, conflicts, and decisions which confront all of them. By integrating a discussion of "facts" and "values," the authors highlight (...) the forces which affect new developments in medicine—such as kidney and heart transplants—and the controversial issues they generate. Katz and Capron explore these issues through the use of dual conceptual perspectives. Their study first examines and evaluates the authority which should be vested in each of the chief participants in the catastrophic disease process—the physician-investigator, the patient-subject and his relatives, the professionals, and the state. Challenging questions are raised concerning medical education, informed consent, and professional responsibility. The authors next explore how the roles and capacities of the participants vary not only according to the basic issues they face but also according to the point in decision-making at which these issues arise. The process of investigating and treating catastrophic diseases, the authors believe, can thus usefully be divided into three decision-making stages—the formulation of policy, the administration of research and therapy, and the review of the decisions and their consequences. In conclusion, Katz and Capron demonstrate the need for a variety of individuals and groups with diverse values to be involved in decision-making in a manner which will not unnecessarily impede the scientific investigation of these diseases. (shrink)