BackgroundChronic kidney disease is a significant cause of global deaths. Those who progress to end-stage kidney disease often commence dialysis as a life-extending treatment. For cognitively impaired patients, the decision as to whether they commence dialysis will fall to someone else. This scoping review was conducted to map existing literature pertaining to how decisions about dialysis are and should be made with, for, and on behalf of adult patients who lack decision-making capacity. In doing so, it forms (...) the basis of a larger body of work that is exploring how these decisions ought to be made.MethodsTo identify relevant papers, searches were conducted on Ovid MEDLINE(R), Embase, PsychINFO, The Cochrane Library, and Web of Science. Inclusion criteria were then applied, requiring that papers: report on empirical studies about how decisions about dialysis are made and/or discuss how decisions about dialysis should be made with, for, and on behalf of adult patients who lack decision-making capacity; be published from 1961 onwards; and be published in English. This resulted in 27 papers eligible for inclusion.ResultsOf note, the majority of papers originated in the United States. There was wide variation across the included papers. Extracted data were grouped under the following themes: involving various parties (patient involvement, family dominance, and wider communication); objectivity about care options (including difficulties with family detachment); cultural sensitivity; medical versus non-medical factors; managing nonadherent patients; and the role and prevalence of substituted judgement. The literature shows that there is inconsistency in the principles and processes surrounding decisions made about dialysis with, for, and on behalf of adult patients who lack decision-making capacity.ConclusionsThis scoping review demonstrates that there is significant variation in both the practice and theory of dialysis decision making with, for, and on behalf of cognitively impaired adult patients. Complexity arises in considering who should get a say, how influential their say should be in a decision, and what factors are most relevant to the decision. A lack of up-to-date literature exploring this issue is highlighted, with this scoping review providing a useful groundwork from which further research can be undertaken. (shrink)

Aim: This study explores priority dilemmas in dialysis treatment and care offered elderly patients within the Norwegian public healthcare system.Background: Inadequate healthcare due to advanced age is frequently reported in Norway. The Norwegian guidelines for healthcare priorities state that age alone is not a relevant criterion. However, chronological age, if it affects the risk or effect of medical treatment, can be a legitimate criterion.Method: A qualitative approach is used. Data were collected through semistructured interviews and analysed through hermeneutical content (...) analysis. The informants were five physicians and four nurses from dialysis wards.Findings: Pressing priority dilemmas centre around decision-making concerning withholding and withdrawal of dialysis treatment. Advanced age is rarely an absolute or sole priority criterion. It seems, however, that advanced age appears to be a more subtle criterion in relation with, for example, comorbidity, functional status and cognitive impairment. Nurses primarily prioritise specialised dialysis care and not comprehensive nursing care. The complex needs of elderly patients are therefore often not always met.Conclusions: Clinical priorities should be made more transparent in order to secure legitimate and fair resource allocation in dialysis treatment and care. Difficult decisions concerning withholding or withdrawal of dialysis ought to be openly discussed within the healthcare team as well as with patients and significant others. The biomedical focus and limitations on comprehensive care during dialysis should be debated. (shrink)

Sean Morrison, the Senior Associate Editor of the Journal of Palliative Medicine, recently depicted advance directives (ADs) and advance care planning (ACP) as “clear, simple, and wrong” (Morrison...

Objective: To evaluate whether ethics rounds stimulated ethical reflection. Methods: Philosopher-ethicist-led interprofessional team ethics rounds concerning dialysis patient care problems were applied at three Swedish hospitals. The philosophers were instructed to stimulate ethical reflection and promote mutual understanding between professions but not to offer solutions. Questionnaires directly before and after rounds were answered by 194 respondents. The analyses were primarily content analysis with Boyd’s framework but were also statistical in nature. Findings: Seventy-six per cent of the respondents reported a (...) moderate to high rating regarding new insights on ethical problem identification, but the ethics rounds did not seem to stimulate the ethical reflection that the respondents had expected (p<0.001). Dominant new insights did not seem to fit into traditional normative ethics but were instead interpreted as hermeneutic ethics. This was illustrated in the extended perspective on the patient and increased awareness of relations to other professions. Regarding insights into how to solve ethical problems, the request for further interprofessional dialogue dominated both before and after rounds. Conclusion: The findings show the need for interprofessional reflective ethical practice but a balance between ethical reflection and problem solving is suggested if known patients are discussed. Further research is needed to explore the most effective leadership for reflective ethical practice. (shrink)

The ethics consultant should consider addressing the following questions to help the involved parties decide how best to proceed: Were the implications of a no-dialysis decision understood?Is it kn...

Doctors who entered the National Health Service to practice medicine now find themselves forced to practise selection. It seems that patients are being lost at GP level. Surely the basis of a good relationship between doctor and patient relies on trust and trust is based on truth which should not be concealed from patients. And should any one dare decide the quality of life for another human being?

Volume 20, Issue 7, July 2020, Page 199-201.

Ethical issues relating to the withdrawal of dialysis are discussed, comparing dialysis with other life-support systems, particularly artificial ventilation. It is argued that there is no ethical difference between discontinuing treatment in each case. One practical difference between the two is that patients with chronic renal failure are less likely to have reduced autonomy, and so can engage in discussions with their doctors regarding the situations in which their life-supporting treatment might be discontinued. It is argued that doctors (...) caring for patients on dialysis have an ethical duty to discuss with these patients the circumstances in which they may wish to discontinue dialysis. (shrink)

The following transcript is adapted from a case conference held in the Barnes and Wohl Hospitals, St. Louis, Missouri. The participants are members of the Departments of Internal Medicine and Pathology of the Washington University School of Medicine. Dr. Renée Fox, professor and chairman of the Department of Sociology at the University of Pennsylvania and co‐author of the book The Courage to Fail, was a guest at the conference.

As ethics consultants on a busy consult service in a large urban setting, we would approach this case by gathering more information and context. This involves clarifying the clinical facts, underst...

Starting dialysis at an advanced age is a clinical challenge and an ethical dilemma. The advantages of starting dialysis at “extreme” ages are questionable as high dialysis-related morbidity induces a reflection on the cost- benefit ratio of this demanding and expensive treatment in a person that has a short life expectancy. Where clinical advantages are doubtful, ethical analysis can help us reach decisions and find adapted solutions. Mr. H is a ninety-year-old patient with end-stage kidney disease that (...) is no longer manageable with conservative care, in spite of optimal nutritional management, good blood pressure control and strict clinical and metabolic evaluations; dialysis is the next step, but its morbidity is challenging. The case is analysed according to principlism (beneficence, non-maleficence, justice and respect for autonomy). In the setting of care, dialysis is available without restriction; therefore the principle of justice only partially applied, in the absence of restraints on health-care expenditure. The final decision on whether or not to start dialysis rested with Mr. H (respect for autonomy). However, his choice depended on the balance between beneficence and non-maleficence. The advantages of dialysis in restoring metabolic equilibrium were clear, and the expected negative effects of dialysis were therefore decisive. Mr. H has a contraindication to peritoneal dialysis (severe arthritis impairing self-performance) and felt performing it with nursing help would be intrusive. Post dialysis fatigue, poor tolerance, hypotension and intrusiveness in daily life of haemodialysis patients are closely linked to the classic thrice-weekly, four-hour schedule. A personalized incremental dialysis approach, starting with one session per week, adapting the timing to the patient’s daily life, can limit side effects and “dialysis shock”. An individualized approach to complex decisions such as dialysis start can alter the delicate benefit/side-effect balance, ultimately affecting the patient’s choice, and points to a narrative, tailor-made approach as an alternative to therapeutic nihilism, in very old and fragile patients. (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.

In Japan, terminating life-sustaining treatment in non-terminal patients is legally and ethically problematic given the lack of legal regulations regarding the termination of LST, including dialysis treatment. This article describes an ethically problematic case that happened at a hospital in Tokyo in March 2019, in which a patient died after a physician withdrew kidney dialysis upon the patient’s request. Most national newspapers in Japan reported the case extensively and raised the question of ethical and legal permissibility of withdrawing (...) dialysis treatment from non-terminal patients. In this article, we first examine the case within the current policy framework in Japan and then discuss how Japan can improve its end-of-life practice, focusing specifically on the patient’s right to self-determination and treatment refusal. We recommend that policymakers consider legalizing the termination of LST and the patient’s right to refuse treatment based on the principle of respect for autonomy. (shrink)

Resource constraints in developing countries compel policy makers to ration the provision of healthcare services. This article examines one such set of Guidelines: A patient dialysing in the state sector in South Africa may not refuse renal transplantation when a kidney becomes available. Refusal of transplantation can lead to exclusion from the state-funded dialysis programme. This Guideline is legally acceptable as related to Constitutional stipulations which allow for rationing healthcare resources in South Africa. Evaluating the ethical merit of the (...) Guideline, and exploring the ethical dilemma it poses, proves a more complex task. We examine the actions of healthcare professionals as constrained by the Guideline. From a best interests framework, we argue that in these circumstances directing patient decision making is not necessarily unethical or unacceptably paternalistic. We then scrutinise the guideline itself through several different ethical ‘lenses’. Here, we argue that bioethics does not provide a definitive answer as to the moral merit of rationing dialysis under these circumstances, however it can be considered just in this context. We conclude by examining a potential pitfall of the Guideline: Unwilling transplant recipients may not comply with immunosuppressive medication, which raises questions for policies based on resource management and rationing. (shrink)

HARWOOD L and CLARK AM. Nursing Inquiry 2012; 19: 29–38Understanding health decisions using critical realism: home-dialysis decision-making during chronic kidney diseaseThis paper examines home-dialysis decision making in people with Chronic Kidney Disease (CKD) from the perspective of critical realism. CKD programmes focus on patient education for self-management to delay the progression of kidney disease and the preparation and support for renal replacement therapy e.g.) dialysis and transplantation. Home-dialysis has clear health, societal and economic benefits yet service (...) usage is low despite efforts to realign resources and educate individuals. Current research on the determinants of modality selection is superficial and insufficient to capture the complexities embedded in the process of dialysis modality selection. Predictors of home-dialysis selection and the effect of chronic kidney disease educational programmes provide a limited explanation of this experience. A re-conceptualization of the problem is required in order to fully understand this process. The epistemology and ontology of critical realism guides our knowledge and methodology particularly suited for examination of these complexities. This approach examines the deeper mechanisms and wider determinants associated with modality decision making, specifically who chooses home dialysis and under what circumstances. Until more is known regarding dialysis modality decision making service usage of home dialysis will remain low as interventions will be based on inadequate epistemology. (shrink)

The provision of “closer-to-patient” services has increased in most industrialized countries. However, the migration of services in non-traditional health care settings implies redefining the role of technical and human entities and transforming the nature and use of technologies and places. Drawing on various scholarly efforts to conceptualize space, place, and technology, this paper compares and contrasts satellite and mobile dialysis units implemented in two regions in the province of Quebec, Canada. The satellite units were hosted in two small, local (...) hospitals where nursing staff had been recently trained. The mobile unit was a bus adapted to host five dialysis stations; nurses traveled back and forth between a university teaching hospital and two sites located within a radius of 7.6 miles. In both projects, nephrologists supervised from a distance via a videoconferencing system. Our aim is to illustrate the ways in which the displacement of technical and human entities gives shape to new forms of emplacement in non-traditional health care settings. The satellite and mobile units contributed to the culture of dialysis care and transformed the identity of nurses, doctors, patients, and technologies. By contrasting two projects involving different spatial and clinical logics, we analyze in what ways certain forms of recombination of human and technical entities can prove incomplete but nevertheless acceptable to providers and project managers. (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)

BackgroundExercise self-efficacy is a vital determinant of an individual’s active participation in regular exercise, and exercise is a critical component of improving health-related quality of life in dialysis patients. This study aimed to describe the relationship between exercise self-efficacy and HRQOL in dialysis patients.Materials and MethodsA cross-sectional study was conducted in Shanghai, China. Structured questionnaires distributed to the patients collected socio-demographic and disease-related information. Physical activity was assessed by a self-administered questionnaire, and the exercise self-efficacy scale was used (...) to measure exercise self-efficacy. HRQOL was evaluated by the kidney disease quality of life instrument-short form version 1.3. Data were analyzed using a univariate generalized linear model, Spearman correlation, and hierarchical multiple regression.ResultsA positive association was observed between exercise self-efficacy and HRQOL. Physical activity as a predictor variable explained 9.8% of the variance in overall HRQOL. Exercise self-efficacy explained an additional 7.1% of the HRQOL variance. In total, 24.6% of the variation in the HRQOL was explained by the socio-demographic variables, disease-related factors, physical activity, and exercise self-efficacy.ConclusionOverall, only 16.9% of the change in HRQOL was explained by physical activity and exercise self-efficacy. Future research is still needed to further explore the factors influencing the HRQOL in dialysis patients. However, this finding suggests the need to consider the importance of HRQOL and physical activity as well as exercise self-efficacy when developing intervention programs. (shrink)

The modern debate on whether—and why—physicians and hospitals can refuse patient or family demands for treatment on grounds of “futility” will be reaching its 20th anniversary this year (Blackhall, 1987). The early debate focused on the use of CPR, for good historical and clinical reasons, and CPR probably remains the primary target of hospital policy. But the reach of the arguments over futility extends well beyond this context, most vividly illustrated by the case of Helga Wanglie and the many commentaries (...) it spawned (Brody, 1998; Schneiderman, 1998; Trotter, 1999). There seems no obvious reason in principle that questions about futility cannot be raised about virtually any form of treatment that patients or families might demand, including such things as chemotherapy for cancer (Tomlinson, 2001). Still, we might fairly ask what new dimensions and complexities the futility question acquires when it moves onto decisions about treatments other than CPR. This is what I would like to do in this essay. I will use dialysis as the case in point, although I hope to extract lessons from the dialysis example that will be pertinent to other forms of life-sustaining treatment, like ventilators. (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)

In the early days of ethics consultation, two pioneer consultants noted that one of their important functions was to gather missing information and correct misinformation relevant to the facts of t...

While people’s lives continue to be put at risk by the dearth of organs available for transplantation, we must give urgent consideration to any option that may make up the shortfall. A market in organs from living donors is one such option. The market should be ethically supportable, and have built into it, for example, safeguards against wrongful exploitation. This can be accomplished by establishing a single purchaser system within a confined marketplace.Statistics can be dehumanising. The following numbers, however, have (...) more impact than most: as of 24th November, during 2002 in the United Kingdom, 667 people have donated organs, 2055 people have received transplants, and 5615 people are still awaiting transplants.1 It is difficult to estimate how many people die prematurely for want of donor organs. “In the world as a whole there are an estimated 700 000 patients on dialysis . . . . In India alone 100 000 new patients present with kidney failure each year”2 . Almost “three million Americans suffer from congestive heart failure . . . deaths related to this condition are estimated at 250 000 each year . . . …. (shrink)

An increasing number of older patients have to decide on a treatment plan for advanced chronic kidney disease, involving dialysis or conservative care. Shared decision-making is recommended as the model for decision-making in such preference-sensitive decisions. The aim of SDM is to come to decisions that are consistent with the patient’s values and preferences and made by the patient and healthcare professional working together. In clinical practice, however, SDM appears to be not yet routine and needs further implementation. A (...) shift from a biomedical to a person-centered conception might help to make the process more shared. Shared should, therefore, be interpreted as two persons bringing two perspectives to the table, that both need to be explored during the decision-making process. Starting from the patient’s perspective will enable to determine the mutual goals of care first and, subsequently, determine the best way for achieving those goals. To perform such SDM, the healthcare professional needs to become a skilled companion, being part of the patient’s relational context, and start asking the right questions about what matters to the patient as person. In this article, we describe the need for a person-centered conception of SDM for the setting of older patients with advanced CKD. (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)

Every year, hundreds of patients in England die whilst waiting for a kidney transplant, and this is evidence that the current system of altruistic-based donation is not sufficient to address the shortage of kidneys available for transplant. To address this problem, we propose a monopsony system whereby kidney donors can opt-in to receive financial compensation, whilst still preserving the right of individuals to donate without receiving any compensation. A monopsony system describes a market structure where there is only one ‘buyer’—in (...) this case the National Health Service. By doing so, several hundred lives could be saved each year in England, wait times for a kidney transplant could be significantly reduced, and it would lessen the burden on dialysis services. Furthermore, compensation would help alleviate the common disincentives to living kidney donation, such as its potential associated health and psychological costs, and it would also help to increase awareness of living kidney donation. The proposed system would also result in significant cost savings that could then be redirected towards preventing kidney disease and reducing health disparities. While concerns about exploitation, coercion, and the ‘crowding out’ of altruistic donors exist, we believe that careful implementation can mitigate these issues. Therefore, we recommend piloting financial compensation for living kidney donors at a transplant centre in England. (shrink)

After a long search, Jonathan has finally found someone willing to donate a kidney to him and thereby free him from dialysis. Meredith is Jonathan's second cousin, and she considers herself a generous person, so although she barely knows Jonathan, she is willing to help. However, as Meredith learns more about the donation process, she begins to ask questions about Jonathan: “Is he HIV positive? I heard he got it using drugs. Has he been in jail? He's already had (...) one live donor, so what happened to the first kidney? Did he forget to take his drugs or something?” The transplant center must, then, decide if Meredith is, in fact, entitled to answers to these kinds of questions. According to the Consensus Statement on the Live Organ Donor, “It is incumbent on the transplant center to provide full and accurate disclosure to potential donors of all pertinent information regarding risk and benefit to the donor and recipient.” But whether answers to the Meredith's questions count as “pertinent information regarding the risk and benefit” is the issue at hand. (shrink)

The aim of this study was to describe nurses' conceptions of decision making with regard to life-sustaining treatment for dialysis patients. Semistructured interviews were conducted with 13 nurses caring for such patients at three hospitals. The interview material was subjected to qualitative content analysis. The nurses saw decision making as being characterized by uncertainty and by lack of communication and collaboration among all concerned. They described different ways of handling decision making, as well as insufficiency of physician—nurse collaboration, lack (...) of confidence in physicians, hindrances to patient participation, and ambivalence about the role of patients' next of kin. Future research should test models for facilitating communication and decision making so that decisions will emerge from collaboration of all concerned. Nurses' role in decision making also needs to be discussed. (shrink)

The spectacular development of medical knowledge over the last two centuries has brought intrusive advances in the capabilities of medical technology. These advances have been remarkable over the last century, but especially over the last few decades, culminating in such high technology interventions as heart transplants and renal dialysis. These increases in medical powers have attracted societal interest in acquiring more such knowledge. They have also spawned concerns regarding the use of human subjects in research and regarding the byproducts (...) of basic research as in the recent recombinant DNA debate. As a consequence of the development of new biomedical knowledge, physicians and biomedical scientists have been placed in positions of new power and responsibility. The emergence of this group of powerful and knowledgeable experts has occasioned debates regarding the accountability of physicians and biomedical scientists. But beyond that, the very investment of resources in the acquisition of new knowledge has been questioned. Societies must decide whether finite resources would not be better invested at this juncture, or in general, in the alleviation of the problems of hunger or in raising general health standards through interventions which are less dependent on the intensive use of high technology. To put issues in this fashion touches on philosophical notions concerning the claims of distributive justice and the ownership of biomedical knowledge. (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)

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)

Who is this young woman that seems to have chosen to die by default? She is in effect parentless at a labile and vulnerable age. An attempt at a different social environment has failed. She is depressed. Unknowns are her issues, feelings, and concerns and whether antidepressants have been tried, and if so, what their effect has been. Additional data not given is whether dialysis has been tried, and if not, why not? The known track record of adolescents doing (...) poorly on dialysis would be a concern, but then so is the loss of a scarce resource. (shrink)