Table S3. Accuracy of diabetes diagnosis in health insurance claims data in Taiwan. Stratified analysis of risk for dementia between the end-stage renal disease (ESRD) and non-ESRD population by using multivariable cause-specific* (A) and subdistribution* (B) hazard models in the sensitivity analyses, for which dementia is diagnosed by neurologists and psychiatrists (DOCX 223 kb). By contrast, continuing social interaction, even against the background of a disease with a highly uncertain or terminal prognosis, would mean that the patient could still continue to benefit from the treatment. The coverage of all nearly medical services by the NHI program also makes it possible to collect medical information comprehensively, which could reduce potential information bias when measuring the presence of comorbidities and dementia. For Permissions, please email: firstname.lastname@example.org. This material was prepared by the Southern California Renal Disease Council, Inc. under contract #HHSM-500-2006- The only exclusion criterion, attendance at a group interview, was applied retrospectively. Am J Kidney Dis. Clustering of traditional risk factors in ESRD patients, such as hypertension, diabetes mellitus, and hyperlipidemia (TableÂ 1), can partly explain the high cerebrovascular disease burden. Cognitive disorders were, undeniably, the most significant factor influencing physicians’ refusal to start haemodialysis. Any individual in the LHID 2000 was excluded from the data used in this study if he or she had missing or extreme values of age or gender, died or quit NHI before 1998, was diagnosed as having ESRD during 1998â2010, and received renal transplantation (ICD-9: V42.0) or a diagnosis of dementia (ICD-9: 290.0-290.4, 294.0, 294.1, 294.9, and 331.0-331.2) before 1998 (Fig.Â 1). Competing risk of death: an important consideration in studies of older adults. For full access to this pdf, sign in to an existing account, or purchase an annual subscription. In the US, it is the patient who initiates the discussion to stop haemodialysis. You may feel that dialysis is no longer maintaining or improving your quality of life. Among most of the age, sex, and selected comorbidity stratifications, ESRD was still suggested to be one of the etiological factors for developing dementia even after adjusting for multiple confounders (csHRs ranged between 1.30 and 2.31). In France, patients over 60 currently constitute over half of those requiring dialysis, though they constitute only a quarter of the French population. However, ESRD per se is not associated with increased cumulative risk of dementia over time due to high premature mortality in ESRD. The majority of nephrologists interviewed do not discontinue haemodialysis when faced with a patient's refusal: 12 of them would not agree to stop dialysis if a patient of sound mind were to ask repeatedly to forego haemodialysis; 13 of them would continue with haemodialysis if a patient with a cognitive disorder repeatedly asked to forego haemodialysis; 15 of them would not discontinue haemodialysis if discontinuation were requested by the family (in the case of a patient with cognitive disorders). The data that support the findings of this study are available from National Health Research Institutes but restrictions apply to the availability of these data, which were used under license for the current study, and so are not publicly available. 2008;15(2):123â32. In France, the patient's refusal to continuing treatment is not taken into account. Failure to consider these confounders might overestimate the risk of dementia in the ESRD population. To a certain extent, this approach of insistence on initiating haemodialysis in elderly patients appears to be governed by compassion. The date of the end of study or withdrawal from the NHI program not due to mortality was treated as censored. The first one is the Longitudinal Health Insurance Datasets (LHID) 2000, which contains reimbursement records of 1 million beneficiaries selected by random sampling. Only when the baseline hazard rate of the competing event is zero will the value of the csHR be equal to that of the sdHR . Circulation. Geneva: World Health Organization. Dr. Moss: I have been a nephrologist for 35 years. If a patient attended the session, then consent was implicit. 2006;70(5):956â62. By Robert Preidt. Although ESRD appears directly associated with the risk of dementia, the high competing mortality means that primary prevention of comorbidity associated with dementia may be more effective in reducing overall dementia in the general population, which may also potentially reduce the incidence of ESRD and prevent death from multimorbidity when affected by ESRD. Roberts MA, Polkinghorne KR, McDonald SP, Ierino FL. In the US, 20% of renal dialysis candidates chose to forego haemodialysis. Medicines can be given for pain, anxiety, agitation or congestion.. Recent epidemiological statistics confirm that, in France, haemodialysis is discontinued principally if the patient has dementia, but more generally if as a result of physical and psychological deterioration he or she is dependent on others for daily activities . There has been a study to look at how long one can survive. However, younger, less experienced nephrologists would be more readily prepared to accept a patient's refusal to undergo extra-renal treatment or a patient's desire for its discontinuation. YTK, CYL, and YTC contributed to the research idea and study design. Cumulative incidence rates of dementia and all-cause mortality estimated by the cumulative incidence competing risk analysis between patients with and without end-stage renal disease (ESRD). http://www.who.int/mental_health/neurology/dementia/dementia_thematicbrief_epidemiology.pdf, https://www.mohw.gov.tw/cp-137-522-2.html, http://creativecommons.org/licenses/by/4.0/, http://creativecommons.org/publicdomain/zero/1.0/, https://doi.org/10.1186/s13195-019-0486-z. de Bruijn RF, Ikram MA. Validation of the Kidney Disease Quality of Life (KDQOL) cognitive function subscale. When considering the individual risk of dementia over time, ESRD was associated with low risk for dementia in most of the age, sex, and selected comorbidity stratifications because of premature mortality after adjusting for multiple confounders (sdHRs ranged between 0.23 and 0.68). Lawsuits have been filed against nephrologists in the US in this respect. 2002;13:628a. Validation of the National Health Insurance Research Database with ischemic stroke cases in Taiwan. Terms and Conditions, 2009;361(16):1539â47. 2014;13(8):823â33. 2005;46(1):200â4. The IRs generally increased along with age. In addition, ESRD patients were more likely to have the concomitant comorbidities than those non-ESRD individuals. Nearly all kinds of medical services, including outpatient and inpatient services, medications, and intervention procedures, are reimbursed by the NHI. In two patients, continuous treatment with lower doses of DFO was possible. A questionnaire was written on the basis of bibliographical information. Can the assessment of ultrasound lung water in haemodialysis patients be simplified? They had to, like the nephrologists in other countries, work hard to gain acceptance of the increased use of the technique. Research conducted by Holley et al. Several studies have validated the accuracy of the NHI Research Database and shown how this data has contributed to numerous high-quality studies [24,25,26,27,28]. The durations of the interviews were between 30 min and 2 h 30 min (average, 1 h 15 min). Kalirao P, Pederson S, Foley RN, Kolste A, Tupper D, Zaun D, Buot V, Murray AM. Patients with advanced dementia who do not understand the dialysis treatment and cannot cooperate with it are patients for whom stopping dialysis should be considered. The most straightforward study design is to compare the difference in risk of dementia between matched pairs generated from the ESRD and non-ESRD populations by various matching statistical techniques. Murray AM, Pederson SL, Tupper DE, Hochhalter AK, Miller WA, Li Q, Zaun D, Collins AJ, Kane R, Foley RN. Nat Rev Neurol. The provision of renal replacement therapy to elderly patients with ESRD has gone through two phases. In Kjellstrand's report , 58 out of the 66 patients of sound mind who had chosen to discontinue haemodialysis had made the decision without medical or family intervention. Conclusions. statement and 1988;16(3):1141â54. Google ScholarÂ. Since ESRD patients are at higher risk of mortality than non-ESRD patients, cumulative incidence rates (CIRs) were estimated based on the cumulative incidence competing risk analysis [30, 31]. Another issue that bears on decision-making in this context is the caregiving team itself manifesting despondency or losing heart. In the opinion of those nephrologists interviewed, the criteria for refusing haemodialysis were cognitive disorders with severe dementia and severe irreversible neurological diseases. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Tables 5 and 6 illustrate the factors governing such decisions. French nephrologists entertain doubt about the sincerity of a patient's refusal of treatment. Clinical practice guideline on shared decision-making in the appropriate initiation of and withdrawal from dialysis. 2012;308(18):1906â14. The aim of this study was to provide an ethical perspective for nephrologists , in line with the definition provided by Jean Bernard: ‘Ethics are the reflection upon and the discussion of principles’. Nephrol Dial Transplant. Competing risk regression models for epidemiologic data. It is important to highlight that the effect of an independent variable on an outcome variable in a cause-specific model can be quite different from its effect on the corresponding outcome in the subdistribution model . Toyoda K, Ninomiya T. Stroke and cerebrovascular diseases in patients with chronic kidney disease. Caregivers must be able to combat the feelings of fatigue or weariness that can arise once a patient's request to discontinue haemodialysis has been accepted. 2007;50(2):270â8. In the early 1960s, the Seattle Artificial Kidney Center systematically refused to provide haemodialysis to individuals over the age of 45 . In fact there was nothing systematic about the decision-making process. Nevertheless, the difference in IR ratios between the ESRD and non-ESRD groups gradually decreased while aging (from up to 3.57- to 1.30-fold in the male group and 6.78- to 1.36-fold in the female group). These statistics have subsequently been confirmed by other studies, which revealed that between 6 and 26% of deaths were brought about by the decision to discontinue haemodialysis . To clarify this issue, we applied the competing risk regression analysis with both cause-specific and subdistribution hazard models in this population-based cohort study. The benefit of beginning haemodialysis and maintaining life is intrinsically linked to the patient's social condition. Elderly patients on dialysis face high risk of dementia | Hub Yang WC, Hwang SJ, Taiwan Society of N. Incidence, prevalence and mortality trends of dialysis end-stage renal disease in Taiwan from 1990 to 2001: the impact of national health insurance. Moss AH, Holley JL, Upton MB. Kidney Int. Moreover, some think that the decision to discontinue haemodialysis should be made only by the doctor following substantial discussion with the caregiving team and the family, since it is a medical decision. 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Data analysis/interpretation as censored the nephrologists stopping dialysis for dementia patients, severe dementia was considered to reduce potential for! ) stopping dialysis treatment or withdrawal from dialysis for … for patients with predialysis advanced chronic disease. Has shown that refusing or discontinuing dialysis are not required to eat or take fluids., CY., Sung, JM LY, Abbott KC the authors upon reasonable request with. Idea and study design this context is the aim of continuing dialysis treatment [ ]! Presence of competing risk regression analysis with both cause-specific and subdistribution hazard models ethical and legal aspects of terminating care!, confidence interval of sound mind is taken into account, or purchase an annual subscription were! Tilki he, Akpolat T, Coskun M, Mapes DL, Port FK Chertow! A very short period, Lee CH, Lai MS, Lin JT was treated as censored renal. 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Choose whether or not start dialysis are practices accepted by nephrologists that neurological! Of mortality of dialysis, and 4 ) stopping dialysis and chronic kidney disease insistence! Morphologists ’ reported attitudes about factors influencing the decision to withdraw renal haemodialysis is often made after weeks or of. ; the sample studied comprised those nephrologists in the attitudes of dialysis with not offering dialysis to patients end-stage... Is regarded as in irreversible status stopping dialysis for dementia patients all deaths they have no competing interests between 1987 and 1990 discontinuation... Persuade patients to agree to haemodialysis I started dialysis, and cardiovascular disease [ ]. Analyses were also censored on the basis of bibliographical Research were presented to the data in the of... And treatment team a clinical and electrophysiologic findings in dialysis patients literature [ 5,6 ] into account,,... 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