Over the last few decades there has been a revival of interest in virtue ethics, with the emphasis on the virtuous caregiver. This paper deals with the ‘virtuous patient’, specifically the patient with End Stage Renal Disease (ESRD). We believe that a virtue approach provides insights not available to current methods of studying coping styles and coping strategies. Data are derived from seven semi-structured in-depth interviews. The transcripts of the interviews were subjected to an Interpretative Phenomenological Analysis (IPA). (...) The focus of the analysis was on ‘living well with chronic illness’. It appears that the moral challenges faced by patients with an ESRD are manifold. When they are invited to tell the story of their illness, they do not explicitly speak of virtues, but they often refer to moral qualities, and to attitudes that can be regarded as virtuous. We identify several such concepts in the narratives of patients with ESRD. We conclude that the Aristotelian model of virtue ethics is particularly descriptively (and possibly also normatively) relevant to the explanation of the life narratives and the moral challenges of patients with an ESRD. (shrink)

In this important study, first published in 1989, Thomas Halper examines the policies and practices of the British National Health Services in treating kidney disease. Technological advances since the 1960s mean that end-stage renal disease, an otherwise fatal condition, can usually be treated successfully. In Britain, however, the availability of resources necessary for treatment has been limited in past years and many people have gone untreated. Professor Halper discusses a number of issues, both ethical and political, that (...) arise from having to choose who does and does not get treated. These issues include: the right to health care; the interaction between political demands, government agencies, and public policy; the promise of technology in a society where resources are scarce; and duties owed the individual by the community. The book draws on numerous personal accounts, often moving or unintentionally revealing, and should prove interesting to professionals and students with an interest in philosophy, health care, public health, public policy and British politics. (shrink)

Background: Living with a renal disease often reduces quality of life because of the stress it entails. No attention has been paid to the moral challenges of living with renal disease. Objectives: To explore the moral challenges of living with a renal disease. Research design: A case study based on qualitative research. We used Walker’s ethical framework combined with narrative ethics to analyse how negotiating care responsibilities lead to a new perspective on moral issues. (...) Participants and research context: One case was chosen from 20 qualitative interviews with renal patients in the Netherlands. Ethical considerations: Several actions have been taken to ensure the informed consent, privacy, anonymity and confidentiality of the patient in this article. More details are offered in this article. The study has been conducted in line with the recommendations of the Medical Ethical Committee of the VU Medical Center. Findings: A renal disease can force people to change their identity, relationships, values and responsibilities. The case study illustrates the moral challenges confronting renal patients. Discussion and conclusion:: Moral issues can be raised by the changes to identities, relationships, values and responsibilities caused by renal disease. Support services for renal patients and their relatives should pay more attention to these issues in order to promote self-management. (shrink)

Anna Chavlovski,1 Greg A Knoll,1–3 Timothy Ramsay,4 Swapnil Hiremath,1–3 Deborah L Zimmerman1–31University of Ottawa, 2Ottawa Hospital, 3Kidney Research Centre, Ottawa Hospital Research Institute, 4Ottawa Methods Centre, Ottawa, ON, CanadaBackground: In patients with end-stage renal disease, use of vitamin D and calcium-based phosphate binders have been associated with progression of vascular calcification that might have an impact on renal transplant candidacy. Our objective was to examine management of mineral metabolism in patients wait-listed for renal transplant and to (...) determine the impact on cardiac perfusion imaging.Methods: Data was collected retrospectively on patients wait-listed for a renal transplant, being either active and on hold. Demographic data, medications, serum concentrations of calcium, phosphate, parathyroid hormone, and cardiac perfusion imaging studies were collected from the electronic health record. Chi-square and Student’s t-tests were used to compare active and on-hold patients as appropriate. Logistic regression was used to examine variables associated with worsening cardiac imaging studies.Results: The wait-listed patients were of mean age 56 ± 14 years and had been on dialysis for 1329 ± 867 days. On-hold patients had received a significantly greater total dose of calcium and were more likely to have developed worsening cardiovascular imaging studies. Total doses of calcium and calcitriol were associated with worsening cardiovascular imaging studies.Conclusion: Patients on hold on the renal transplant waiting list received higher total doses of calcium. A higher total dose of calcium and calcitriol was also associated with worsening cardiovascular imaging. Time on dialysis before transplant has been associated with worse post-transplant outcomes, and it is possible that the total calcium and calcitriol dose received contributed to these inferior outcomes.Keywords: dialysis, calcium, cardiac, transplantation. (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)

Patients with end-stage renal disease experience significant mortality and morbidity, including cognitive decline. Advance care planning has been emphasized as a responsibility and priority of physicians caring for patients with chronic kidney disease in order to align with patient values before decision-making capacity is lost and to avoid suffering. This emphasis has proven ineffective, as illustrated in the case of a patient treated in our hospital. Is this ineffectiveness a consequence of failure in the courtroom or the (...) clinic? Through our own experience we affirm what has been written before: that legal precedent favors intensive treatment in virtually all cases without ‘clear and convincing evidence’ of a patient’s previously declared wishes to the contrary. Equally clear is that more than 20 years of support in the clinical literature suggesting advance care planning early in the course of disease can address challenges in the legal system for those lacking capacity. However, many physicians fail t... (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)

© 2015 NATCO, The Organization for Transplant Professionals.Despite the known benefits of kidney transplant, less than 30% of the 615 000 patients living with end-stage renal disease in the United States have received a transplant. More than 100 000 people are presently on the transplant waiting list. Although the shortage of kidneys for transplant remains a critical factor in explaining lower transplant rates, another important and modifiable factor is patients' lack of comprehensive education about transplant. The purpose of (...) this article is to provide an overview of known best practices from the broader literature that can be used as an evidence base to design improved education for ESRD patients pursuing a kidney transplant. Best practices in chronic disease education generally reveal that education that is individually tailored, understandable for patients with low health literacy, and culturally competent is most beneficial. Effective education helps patients navigate the complex health care process successfully. Recommendations for how to incorporate these best practices into transplant education design are described. Providing more ESRD patients with transplant education that encompasses these best practices may improve their ability to make informed health care decisions and increase the numbers of patients interested in pursuing transplant. (shrink)

Three ethical principles currently determine both law and practice with respect to starting and stopping dialysis in end stage renal disease cases: Medical Futility, Respect for Life, and Patient Sel-determination. Even where dialysis is not medically futile, patients possessing capacity, and patients lacking capacity but with valid, functioning proxy decision-makers, self-determination is the dominant principle, in that efforts to prolong and preserve life may be set aside or not initiated at the request of the adequately informed patient or (...) the patient’s proxy, both presumed conclusively to be acting in the patient’s own “best interests.” Where the patient lacks capacity and there is no proxy, Respect for Life dominates, and we are required to initiate and continue dialysis that is not medically futile, except where there is available clear and compelling evidence that the patient would not want life prolonged with dialysis, as in an advance directed or documented conversation. This category of patients — those lacking capacity who have given neither advance directives nor designated proxies — constitutes a continuum of cases. “At one extreme is the patient who will actually be harmed by dialysis — that is, the effects of dialysis will cause damage to other functions, or will cause significant increase in pain and suffering that would not occur absent the dialysis. In such situations, it can be said that [initiation of] continuation of dialysis is not medically reasonable,”i or is medically futile. The middle portion is the range of “difficult cases . . . where the therapeutic value of dialysis is.. (shrink)

BackgroundEnd-stage renal disease (ESRD) is the final stage of chronic kidney disease. Yet dialysis is not suitable for all ESRD patients. Moreover, while shared decision-making (SDM) is the prefer...

Kidney transplantation is the most efficacious and cost-effective treatment for end-stage renal disease. However, the treatment’s accessibility is limited by a chronic shortage of transplantable kidneys, resulting in the death of numerous patients worldwide as they wait for a kidney to become available. Despite the implementation of various measures the disparity between supply and needs continues to grow. This paper begins with a look at the current treatment options, including various sources of transplantable kidneys, for end-stage renal (...) disease. We propose, in accordance with others, the introduction of compensated kidney donation as a means of addressing the current shortage. We briefly outline some of the advantages of this proposal, and then turn to examine several of the ethical arguments usually marshaled against it in a bid to demonstrate that this proposal indeed passes the ethics test. Using available data of public opinions on compensated donation, we illustrate that public support for such a program would be adequate enough that we can realistically eliminate the transplant waiting list if compensation is introduced. We urge a pragmatic approach going forward; altruism in living kidney donation is important, but altruism only is an unsuccessful doctrine. (shrink)

There is a long-standing debate concerning the eligibility of patients suffering from alcohol-related end-stage liver disease (ARESLD) for deceased donor liver transplantation. The question of retrospective and/or prospective responsibility has been at the center of the ethical discussion. Several authors argue that these patients should at least be regarded as partly responsible for their ARESLD. At the same time, the arguments for retrospective and/or prospective responsibility have been strongly criticized, such that no consensus has been reached. A third option (...) was proposed as a form of compromise, namely that responsibility should only be used as a tiebreaker in liver allocation. The present study provides an ethical investigation of this third option. First, we will provide an overview of the main arguments that have been offered for and against the use of responsibility as an allocation criterion. Second, we will explore the concept of responsibility as a tiebreaker in detail and discuss several types of situations, in which responsibility could be used as a tiebreaker, as well as the main ethical challenges associated with them. As we will show, an ethical justified use of responsibility as a tiebreaker is limited to a very restricted number of cases and is associated with a number of ethical concerns. For this reason, waiting time should be preferred as a tiebreaker in liver allocation, even though the criterion of waiting time, too, raises a number of equity-related concerns. (shrink)

In Mexico, diabetes mellitus is the main cause of end − stage kidney disease, and some patients may be transplant candidates. Organ supply is limited because of cultural issues. And, there is a lack of standardized clinical guidelines regarding organ donation. These issues highlight the tension surrounding the fact that living donors are being selected despite being prediabetic. This article presents, examines and discusses using the principles of non-maleficience, autonomy, justice and the constitutionally guaranteed right to health, the ethical (...) considerations that arise from considering a prediabetic person as a potential kidney donor. (shrink)

The best treatment for end-stage renal disease is the transplantation of a live donor kidney, but many people cannot donate to their loved ones because they are incompatible. Kidney exchange promises relief. Kidney exchange programmes use centralised procedures to match donors with recipients in a way that maximises the quantity and quality of transplants. However, the transplant laws in many countries render kidney exchange programmes impossible because of ethical concerns against these programmes or against kinds of kidney donations (...) on which these programmes rely. I give two novel arguments for the implementation of kidney exchange programmes. The first is that they are instrumental in meeting a moral obligation, namely to donate effectively. The second is that they may increase the motivation for altruistic donations, because the donation of one kidney may trigger >1 life savings. Moreover, ethical concerns are considered that are embodied in transplant laws preventing the implementation of kidney exchange, and it is argued that they can be overcome. (shrink)

The British National Health Service (BNHS) was founded, to quote Minister of Health Aneurin Bevan, to ‘universalise the best’. Over time, however, financial constraints forced the BNHS to turn to incrementalist budgeting, to rationalise care and to ask its practitioners to act as gatekeepers. Seeking a way to ration scarce tertiary care resources, BNHS gatekeepers began to use chronological age as a rationing criterion. Age-rationing became the ‘done thing’ without explicit policy directives and in a manner largely invisible to patients, (...) to Parliament, and to the public. The invisibility of the practice, however, violates the publicity principle that John Rawls and other philosophers believe essential to fairness. BNHS invisible age-rationing practices are thus a test case of the principle that fairness presupposes publicity; they raise the question: is it possible to preserve equitability in a system that uses non-public criteria to allocate scarce resources? To seek an answer, published data on access to end-stage renal disease (ESRD) treatment in Britain and the European Community (EC) are analysed. Among the findings are: that BNHS age-rationing acts as an excuse for denying care to those most likely to need ESRD treatment; and is, moreover, arbitrary and inequitable. It is further argued that no age-rationing policy can sustain visibility, and that, if the BNHS is to be fair to its patients, it must reform its present age-rationing practices, replacing them by a publicly visible, outcome-based rationing policy that rations either in terms of QALYs or triage categories. (shrink)

Living kidney transplantation offers the best treatment in terms of life-expectancy and quality of life for those with end-stage renal disease. The long-term risks of living donor nephrectomy, although real, are very small, with evidence of good medium-term outcomes. Who should be entitled to donate, and in which circumstances, is nevertheless a live question. We explore the ethical dimensions of a request by an individual to donate both of their kidneys during life: ‘dual living kidney donation’. Our ethical (...) analysis is tethered to a hypothetical case study in which a father asks to donate a kidney to each of his twin boys. We explore the autonomy of the protagonists, alongside different dimensions of the public interest, such as the need to protect not only the recipients, but also the donor and even the wider community. Whilst acknowledging objections to ‘dual-donation’, not least by reference to the harms that the donor might be expected to endure, we suggest there is a prima facie case for permitting this, provided that both donor and recipients are willing and that due attention is paid to such considerations as the autonomy and welfare of all parties, as well as to the wider ramifications of acting on such a request. We argue for broader interpretations of the concepts of autonomy and welfare, recognizing the importance of relationships and the relevance of more than merely physical well-being. Equipped with such a holistic assessment, we suggest there is a prima facie case for allowing ‘dual living kidney donation’. (shrink)

Almost 60,000 people in the United States with end stage renal disease are waiting for a kidney transplant. Because of the scarcity of organs from deceased donors live kidney donors have become a critical source of organs; in 2001, for the first time in recent decades, the number of live kidney donors exceeded the number of deceased donors. The paradigm used to justify putting live kidney donors at risk includes the low risk to the donor, the favorable risk-benefit (...) ratio, the psychological benefits to the donor, altruism, and autonomy coupled with informed consent; because each of these arguments is flawed we need to lessen our dependence on live kidney donors and increase the number of organs retrieved from deceased donors. An "opting in" paradigm would reward people who agree to donate their kidneys after they die with allocation preference should they need a kidney while they are alive. An "opting in" program should increase the number of kidneys available for transplantation and eliminate the morally troubling problem of "organ takers" who would accept a kidney if they needed one but have made no provision to be an organ donor themselves. People who "opt in" would preferentially get an organ should they need one at the minimal cost of donating their kidneys when they have no use for them; it is a form of organ insurance a rational person should find extremely attractive. An "opting in" paradigm would simulate the reciprocal altruism observed in nature that sociobiologists believe enhances group survival. Although the allocation of organs based on factors other than need might be morally troubling, an "opting in" paradigm compares favorably with other methods of obtaining more organs and accepting the status quo of extreme organ scarcity. Although an "opting in" policy would be based on enlightened self-interest, by demonstrating the utilitarian value of mutual assistance, it would promote the attitude that self-interest sometimes requires the perception that we are all part of a common humanity. (shrink)

I would have preferred that the Special Section on Children as Organ Donors had focused on the donation of a specific organ because morally relevant differences are obscured when the subject is discussed in general terms. The donation of a lobe of liver and peripheral blood or bone marrow stem cells does not result in the permanent loss of vital tissue because these organs regenerate; however, a kidney does not regenerate and its donor loses a vital organ permanently. Liver tissue (...) and peripheral blood or bone marrow stem cells are typically required to save a life, but, because most patients with end-stage renal disease can be kept alive on dialysis, the donation of a kidney is rarely life saving. Also, donor risk is organ specific; for example, it is more dangerous to donate a lobe of liver than it is to donate peripheral blood or bone marrow stem cells. (shrink)

In a provocative 1991 paper, Alvin Moss and Mark Siegler argued that it may be fair to give individuals with alcohol-related end-stage liver disease lower priority for a liver transplant than those who develop end-stage liver disease from other factors. Like other organs, there is a substantial gap between the available livers for transplantation and the number of people who need liver transplants. Yet, unlike those with end-stage renal disease, who can survive for some time on (...) dialysis before receiving a kidney transplant, those with liver failure will die without a liver transplant. (shrink)

In 1999, a case was described on national television in which a woman had enlisted onto an international bone marrow registry with the altruistic desire to offer her bone marrow to some unidentified individual in need of a transplant. The potential donor then was notified that she was a compatible match with someone dying from leukemia and gladly donated her marrow, which cured the recipient of the disease. Years later, though, the recipient developed end-stage renal disease, a (...) consequence of the high-dose chemotherapy she received earlier to destroy her stem cells and prepare her for the bone marrow transplant. Finding a suitable donor for a kidney transplant proved extremely difficult. Desperate, she requested that the donor registry personnel help her locate the individual who earlier was determined to be a compatible donor and asked this now-identifiable individual to consider donating one of her two normally functioning kidneys for a kidney transplant. (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)

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

Organ transplantation remains one of modern medicine's remarkable achievements. It saves lives, improves quality of life, diminishes healthcare expenditures in end-stage renal patients, and enjoys high success rates. Yet the promise of transplantation is substantially compromised by the scarcity of organs. The gap between the number of patients on waiting lists and the number of available organs continues to grow. As of January 2006, the combined waiting list for all organs in the United States was 90,284. Unfortunately, thousands of (...) potential organs are lost each year, primarily due to lack of consent to donation from the deceased before death, or from the family thereafter. Only fifty percent of potential donors – the “conversion” rate – become actual donors. The costs attributed to organ shortage are substantial – Medicare paid over $15.5 billion in 2002 for treating patients with end-stage renal-disease, who predominate on organ waiting lists. (shrink)

Transplantation is now the best therapy for eligible patients with end-stage organ disease. For patients with failed kidneys, successful renal transplantation improves the quality and increases the quantity of their lives. For people with other types of organ failure, transplantation offers the only hope for long-term survival. a.

Autonomy, an individual's right to make personal decisions regarding his/her own health, represents one of the major ethical principles of medicine. While there are many examples citing the benefits this right provides for the individual, the impact that personal healthcare decisions have on others is often neglected. Here, evidence from end-stage renal disease is reviewed to hypothesise the creation of a universal kidney donation programme that although provides unparalleled benefits to its citizens, relies on the participation of a (...) large proportion of the society. Given that this essay also addresses the public's major concerns regarding kidney donation, one of the only remaining implementation barriers is the individuals' right not to participate. Therefore, irrespective of the humane and complex emotionally laden reasons for not enrolling in such programmes, this essay provides some estimates of the significant resource and quality of life costs associated with autonomy. Assuming humans are competent to make informed personal healthcare choices, similar to recent efforts to increase awareness about the negative impact of certain lifestyle choices on global warming, citizens should also be better informed about the medical costs their autonomy has on society. (shrink)

Living kidney transplantation offers the best results for patients with end-stage renal disease (ESRD). This form of transplantation is no longer restricted to genetically or emotionally related donors, as shown by the acceptance of non-directed living anonymous donors, and the development of exchange programmes (EPs). EPs make it possible to perform living kidney transplantation among incompatible pairs, but while such programmes can help increase living organ donation, they can also create a degree of unfairness. Kidney transplant recipients in (...) the O blood group are at a disadvantage when it comes to EPs because they can only receive organs from O donors, whereas O donors are universal donors. This poses a major challenge in terms of distributive justice and equity. A way to remedy this situation is through altruistic unbalanced paired kidney exchange (AUPKE), in which a compatible pair consisting of an O blood group donor and a non-O recipient is invited to participate in an EP. Although the AUPKE approach appears fairer for O recipients, it still raises ethical questions. How does this type of exchange affect the donor/recipient gift relationship? Should recipients in compatible pairs receive a ‘better organ’ than the one they would otherwise have received from their intended donor? Finally, what is the role of transplant teams in AUPKE? This article will examine the organisational and ethical challenges associated with EPs and AUPKE, and compare different EP policies in countries where such programmes exist. (shrink)

This is the God Squad. It is faceless, impersonal, unmoved by tragedy, almost terrorist in aspect. The photo appeared in LIFE magazine on November 9, 1962, and it depicted the Admissions and Policy Committee of the Seattle Artificial Kidney Center. The Committee had been established in 1962 to select those few persons who would be admitted to the new and tiny dialysis unit that was created by Dr. Belding Scribner, inventor of the arteriovenous shunt. It consisted of seven anonymous members (...) – a minister, a lawyer, a businessman, a homemaker, a labor leader, and two physicians. Each month they received a pile of charts about persons with end-stage renal disease. A prior medical evaluation had rated them all medically suitable for dialysis. The Committee’s task was to select one or two out of a dozen or so to take the available spots. The others were left to die. After several years of this agonizing work, the amendments to the Social Security Act provided financial support for renal dialysis and transplant, allowing the Admission Committee some peace of mind. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Carmen MirandaJessica LesCarmen Miranda, she called herself today. She suffered from decades of schizoaffective disorder and now more recently, end–stage renal disease from uncontrolled diabetes. I first met Carmen two weeks prior when she had been brought to the hospital on a 72 hour psychiatric hold for self–harm. She failed to go to dialysis for a week, an act that would kill her if allowed to continue. (...) Now she was here again, for the same reason.Everyone of competent mind has the right to refuse medical treatment. Unfortunately, Carmen’s mind was not currently grounded in reality. So against her will, our family medicine team admitted her to the hospital and arranged for dialysis early the next morning. None of us liked doing this. Fortunately, when the time came for the dialysis tech to insert the dialysis catheter into her shunt, Carmen agreed peacefully. After her dialysis, we had no right to keep her in the hospital because her life was no longer in danger, at least until the next week. We discharged her to home. However the question remained, what about next time?To navigate this ethical gray zone, we called an ethics committee meeting. An ethicist, nurses, hospital social workers, the inpatient family medicine resident team, and most importantly, two people who knew her very well—her caseworker and long–term psychiatrist—discussed her case for an [End Page 103] hour. Our medicine team learned that in her last period of clarity two months prior, Carmen made contradictory statements regarding her wishes. Carmen told her caseworker she was tired of dialysis and being sick and stated it was time to let herself go. During the same lucid week she told her psychiatrist that she was grateful she had been forced to complete dialysis against her wishes after a run of non–adherence while suffering psychosis a couple of months prior. Now months later she was in a downward spiral, exacerbated by the deterioration of her mentally ill husband. If she missed a dialysis treatment here and there, it was okay, but when she went on a run missing several treatments, it was slow suicide.The ethics meeting concluded that Carmen needed to complete an advanced directive and select a power of attorney other than her gravely incompetent husband as soon as she was deemed competent. If she did not become lucid again, her psychiatric team should apply for conservatorship, a legally appointed person who serves as guardian for a gravely disabled mentally ill person. However, conservatorship would take months. In the interim, the ethics committee ruled that our medicine team would continue to provide lifesaving treatment for her, against her wishes if necessary.The ethics meeting adjourned but our medicine team remained in a gray area. To what length should we go to treat her? If she continued to refuse dialysis would we hold her in the hospital until she became sufficiently docile by inevitable uremia that we could peacefully dialyze her? Possibly. Would we go so far as to put her under anesthesia to complete her dialysis? Personally, I hoped not.Just three days after the ethics committee meeting, her caseworker found Carmen yelling nonsensical phrases through the front door of her home while her husband held the door shut with his beer belly and good shoulder. After gaining entry later in the day, Carmen’s caseworker found their mutual medication collection strewn in the bathtub and no food in the house. He placed Carmen on a psychiatric hold and transported her to the hospital. The emergency department paged me when Carmen arrived. I braced myself for the possibilities that lay ahead. When I reached Carmen, she was sitting in a room reserved for psychiatric patients and under watch by a friendly police officer accustomed to these situations.“Hi, Carmen,” I said, one step into her room. She sat on the edge of the gurney, wrapped in three blankets.“Cold,” she said.The police officer spoke from behind my shoulder, “She has been requesting cup after cup of ice water, she won’t take anything else.”“Let’s get you more comfortable.” I returned with a warm blanket and draped it over her... (shrink)

PurposeThe acute-on-chronic exacerbations of end-stage respiratory diseases often result in prolonged hospital stays, relating these events to ethical conflicts in the fields of medical futility and distributive justice. This study aimed to understand patients’ preferences for life-sustaining treatments when clinically stable and during regular follow-up visits, and to determine the factors that can influence these preferences.ProcedureThis was a prospective, observational, exploratory study using convenience sampling. Over a three-year period, the study enrolled 106 adult outpatients with end-stage pulmonary disease on (...) long-term oxygen treatment with/without noninvasive mechanical ventilation with dyspnoea scores of 6 or more in the modified Borg dyspnoea scale and one of the following: Gold stage IV, diffusing capacity <40%, heart failure ) stage III/IV, or systolic pulmonary artery... (shrink)

Kidney donation by young children and the mentally retarded has been supported by court decisions, arguments based on obligations inherent in family relationships, an array of contextual factors, and the principle of beneficence. These justifications for taking organs from people who cannot protect themselves are problematic and must be weighed against our obligation to protect the vulnerable. A compromise solution is presented that strongly protects young children and the mentally retarded but does not abdicate all responsibility to relieve suffering. Guidelines (...) are proposed that prohibit the retrieval of kidneys from young children and the mentally retarded but permit one exception. They would allow retrieval of a kidney when the consequence to a first order relative with whom the donor has a meaningful and valuable relationship is otherwise imminent death. This would be done in accordance with additional guidelines that minimize harm to the donor. Since most patients with end stage renal disease can be maintained on dialysis the need for a kidney to prevent death should be an uncommon occurrence. This compromise is proposed as a solution to a dilemma that exists because two ethical principles are in conflict and one cannot be honored without violating the other. (shrink)

Amit Sharma, Rajesh Ramanathan, Marc Posner, Robert A Fisher Hume-Lee Transplant Center, Virginia Commonwealth University, Richmond, VA, USA: Pediatric kidney transplantation is the preferred treatment for children with end-stage renal disease. The most common indications for transplantation in children are renal developmental anomalies, obstructive uropathy, and focal segmental glomerulosclerosis. Living donor kidney transplants are often performed pre-emptively and offer excellent graft function. Policy changes in deceased-donor kidney allocation have increased the proportion of such transplants in pediatric recipients. (...) Adequate pretransplant workup along with evaluation of urologic abnormalities is imperative in achieving good outcomes. Overall, patient and graft outcomes after kidney transplantation have improved, with five-year deceased donor and living donor graft survivals of 78.8% and 84.3%, respectively. Improvements in induction and maintenance immunosuppression have contributed to the gradual improvement in outcomes. Unique challenges in pediatric recipients include increased graft thrombosis, adverse growth, and abnormal development relating to immunosuppression, increased rejection due to nonadherence, increased susceptibility to opportunistic infections, and post-transplant malignancy. This review focuses on the current practices and outcomes in pediatric kidney transplantation in North America. We discuss the indications for transplantation, the evaluation process, some key surgical and immunologic considerations, and the common risk factors for graft dysfunction. Keywords: pediatric kidney transplantation, end-stage renal disease, dialysis, organ donors, immunosuppression. (shrink)

The Malnutrition-Inflammation Score was initially proposed to evaluate malnutrition-inflammation complex syndrome in end-stage renal disease patients. Although MICS should be routinely evaluated to reduce the hospitalization and mortality rate of ESRD patients, the inconvenience of the MIS might limit its use. Cerebral complications in ESRD, possibly induced by MICS, were previously assessed by using spectral electroencephalography via the delta/theta ratio and microstate analysis. Correspondingly, EEG could be used to directly assess MICS in ESRD patients, but the relationships among (...) MICS and these EEG features remain inconclusive. Thus, we aimed to investigate the delta/theta ratio and microstates in ESRD patients with high and low risks of MICS. We also attempted to identify the correlation among the MIS, delta/theta ratio, and microstate parameters, which might clarify their relationships. To achieve these objectives, a total of forty-six ESRD subjects were willingly recruited. We collected their blood samples, MIS, and EEGs after receiving written informed consent. Sixteen women and seven men were allocated to low risk group. Additionally, high risk group contains 15 women and 8 men. Here, we discovered that delta/theta ratio and most microstate parameters were significantly different between subject groups. We also found that the delta/theta ratio was not correlated with MIS but was strongly with the average microstate duration ; hence, we suggested that the average microstate duration might serve as an alternative encephalopathy biomarker. Coincidentally, we noticed positive correlations for most parameters of microstates A and B and stronger negative correlations for all microstate C parameters. These findings unveiled a novel EEG biomarker, the MIC index, that could efficiently distinguish ESRD patients at high and low risk of MICS when utilized as a feature in a binary logistic regression model. We expected that the average microstate duration and MIC index might potentially contribute to monitor ESRD patients in the future. (shrink)

Almost 60,000 people in the United States with end stage renal disease are waiting for a kidney transplant. Because of the scarcity of organs from deceased donors live kidney donors have become a critical source of organs; in 2001, for the first time in recent decades, the number of live kidney donors exceeded the number of deceased donors. The paradigm used to justify putting live kidney donors at risk includes the low risk to the donor, the favorable risk-benefit (...) ratio, the psychological benefits to the donor, altruism, and autonomy coupled with informed consent; because each of these arguments is flawed we need to lessen our dependence on live kidney donors and increase the number of organs retrieved from deceased donors. An “opting in” paradigm would reward people who agree to donate their kidneys after they die with allocation preference should they need a kidney while they are alive. An “opting in” program should increase the number of kidneys available for transplantation and eliminate the morally troubling problem of “organ takers” who would accept a kidney if they needed one but have made no provision to be an organ donor themselves. People who “opt in” would preferentially get an organ should they need one at the minimal cost of donating their kidneys when they have no use for them; it is a form of organ insurance a rational person should find extremely attractive. An “opting in” paradigm would simulate the reciprocal altruism observed in nature that sociobiologists believe enhances group survival. Although the allocation of organs based on factors other than need might be morally troubling, an “opting in” paradigm compares favorably with other methods of obtaining more organs and accepting the status quo of extreme organ scarcity. Although an “opting in” policy would be based on enlightened self-interest, by demonstrating the utilitarian value of mutual assistance, it would promote the attitude that self-interest sometimes requires the perception that we are all part of a common humanity. (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)

Controversies associated with the use of Tylenol are not new to Johnson & Johnson. Reported cases of poisoning in 1982 and 1986 raised serious concerns about both the life of the analgesic and the well-being of consumers. In 1994, the results of two clinical studies raised product safety concerns about acetaminophen-based over-the-counter analgesics, suggesting development of hepatotoxicity, and an increased risk of end-stage renal disease. The alarm created by the studies is not of the same magnitude as the (...) 1980s poisonings and the circumstances differed in that the findings did not only apply to acetaminophen-based analgesics; nonetheless, the implications of the latter are equally significant. Still operating by the same company credo, how Johnson & Johnson has handled the link between acetaminophen and hepatotoxicity and ESRD is of interest ; in particular, management's efforts to reassure both consumers and company shareholders. (shrink)

Controversies associated with the use of Tylenol are not new to Johnson & Johnson. Reported cases of poisoning in 1982 and 1986 raised serious concerns about both the life of the analgesic and the well-being of consumers. In 1994, the results of two clinical studies raised product safety concerns about acetaminophen-based over-the-counter analgesics, suggesting development of hepatotoxicity, and an increased risk of end-stage renal disease. The alarm created by the studies is not of the same magnitude as the (...) 1980s poisonings and the circumstances differed in that the findings did not only apply to acetaminophen-based analgesics; nonetheless, the implications of the latter are equally significant. Still operating by the same company credo, how Johnson & Johnson has handled the link between acetaminophen and hepatotoxicity and ESRD is of interest ; in particular, management's efforts to reassure both consumers and company shareholders. (shrink)

Living donor kidney transplantation has increased significantly in the past 10 years. Currently it accounts for 41% of all kidney transplants in the USA.1 While the percentage is lower in the United Kingdom and other European countries, the number of living compared with cadaveric kidney donors will probably continue to increase globally. Mortality associated with surgery on live donors is low, thanks largely to the success of laparoscopic nephrectomy. Kidney transplantation from a living donor is preferable to that from a (...) cadaveric, or deceased, donor because of its superior graft and patient survival outcomes. It also preempts the need for or reduces the duration of dialysis for individuals with end-stage renal disease and therefore greatly improves their quality of life.Some who donate kidneys to anonymous recipients are motivated by altruism, with no direct benefit and only an indirect psychological benefit as a consequence of donating. Those who donate may be motivated by prudential reasons involving shared interests, or by a sense of obligation grounded in emotional relations. This includes donations between spouses, siblings, parents and children and may also include donations between intimate friends. Others may be motivated to donate by the prospect of financial gain. In a recent article on kidney markets, The Economist claimed that those who donate one of their healthy kidneys do so at “very little risk to their health”.2 Presumably, this provides support for these markets. In 2004, Zell Kravinsky, an American in his early 40s, gave away one of his healthy kidneys to a stranger as part of a utilitarian obligation to help other people and maximise the good by saving or improving the quality of their lives.3 He estimated that this entailed a statistically insignificant risk to his health. In a lecture to an ethics class at …. (shrink)

The Office of Inspector General, Department of Health and Human Services, has issued a proposed rule under section 5201 of the Omnibus Consolidated and Emergency Supplemental Appropriations Act for Fiscal Year 1999 that would provide a safe harbor from civil sanctions under section 1128A of the Social Security Act for independent dialysis facilities that pay premiums for Supplementary Medical Insurance or Medicare Supplemental Health Insurance Policies for financially needy Medicare beneficiaries with end-stage renal disease.End-stage renal disease (...) is a chronic disease that requires regular dialysis treatments and monitoring of laboratory values, diet and medication. ESRD patients suffer from irreversible renal failure, often accompanied by diabetes, anemia, hypertension and congestive heart failure. (shrink)

The Office of Inspector General, Department of Health and Human Services, has issued a proposed rule under section 5201 of the Omnibus Consolidated and Emergency Supplemental Appropriations Act for Fiscal Year 1999 that would provide a safe harbor from civil sanctions under section 1128A of the Social Security Act for independent dialysis facilities that pay premiums for Supplementary Medical Insurance or Medicare Supplemental Health Insurance Policies for financially needy Medicare beneficiaries with end-stage renal disease.End-stage renal disease (...) is a chronic disease that requires regular dialysis treatments and monitoring of laboratory values, diet and medication. ESRD patients suffer from irreversible renal failure, often accompanied by diabetes, anemia, hypertension and congestive heart failure. (shrink)

The Office of Inspector General, Department of Health and Human Services, has issued a proposed rule under section 5201 of the Omnibus Consolidated and Emergency Supplemental Appropriations Act for Fiscal Year 1999 that would provide a safe harbor from civil sanctions under section 1128A of the Social Security Act for independent dialysis facilities that pay premiums for Supplementary Medical Insurance or Medicare Supplemental Health Insurance Policies for financially needy Medicare beneficiaries with end-stage renal disease.End-stage renal disease (...) is a chronic disease that requires regular dialysis treatments and monitoring of laboratory values, diet and medication. ESRD patients suffer from irreversible renal failure, often accompanied by diabetes, anemia, hypertension and congestive heart failure. (shrink)

We present the perspective of a Bioethics Consultation Service operating in an urban hospital in Dayton, Ohio, USA, as it adapted to treating Sars-CoV-2 patients throughout 2020. Since the first case of COVID-19 was reported in Ohio on 9 March 2020, until 1 January 2021, the Bioethics Consultation Service was consulted 60 times, a 22.5% increase from the same period of 2019. The most common diagnoses requiring consultation included end-stage renal disease requiring dialysis, out-of-hospital cardiac arrest, and sepsis. (...) Only 10% of consultations were for patients hospitalized with COVID-19. This is a qualitative analysis of the cases we saw and a discussion of factors that affected our service while adapting to COVID-19 standards of care. (shrink)

Nurses and midwives are the majority of healthcare professionals globally, including Africa, and they provide care at all levels of the health system including community levels. Nurses and midwives contribute to the care of patients with rigid or dogmatic religious beliefs or those with suicidal ideations. This review paper discusses acute and chronic diseases that have suicidal tendencies such as terminal cancer, diseases with excruciating pain, physical disability, stroke, end-stage renal failure, and diabetics who are amputated. It was reiterated (...) that nurses and midwives taking care of these patients should be alert and observant to identify their suicidal tendencies. The paper also discusses religious or spiritual inclinations that negatively affect healthcare access and adherence, especially to biomedical or western medicine. It was emphasized that some religious beliefs do not allow their followers to employ biomedical treatment and nurses and midwives should not impose their faith on patients and their families. The paper ends with a discussion on the specific roles of nurses and midwives in the care of patients with suicidal ideations such as assessment, counseling, administering medication, observation, social interaction, ensuring safety measures, and providing an enabling environment for the family to part of the care and for the observation of religious coping strategies. Nurses and midwives should enhance their knowledge and skills on suicide and increase public education on suicide prevention and identification of those at risk. (shrink)

At the end of life, pain management is commonly a fundamental part of the treatment plan for patients where curative measures are no longer possible. However, the increased recognition of opioid diversion for secondary gain coupled with efforts to treat patients in the home environment towards the end of life creates the potential for ethical dilemmas in the palliative care management of terminal patients in need of continuous pain management. We present the case of an end-stage patient with rectal cancer (...) who required a continuous residential narcotic infusion of fentanyl for pain control due to metastatic disease. His functional status was such that he had poor oral intake and ability to perform other activities of daily living, but was able to live at home with health agency nursing care. The patient presented to this institution with a highly suspect history of having lost his fentanyl infusion in a residential accident and asking for a refill to continue home therapy. The treating physicians had concerns of diversion of the infusion medication by caregivers and were reluctant to continue the therapeutic relationship with the patient. This case exemplifies the tension that can exist between wanting to continue with palliative care management of an end-stage patient and the fear of providers when confronted by evidence of potential diversion of opioid analgesic medications. We elucidate how an ethical framework based on a combination of virtue and narrative/relationship theories with reference to proportionality can guide physicians to a pragmatic resolution of these difficult situations. (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)