de Bruijn RF, Ikram MA. To address the considerable medical expenditure and social burden resulting from the lack of an effective cure for dementia, prevention strategies are needed to identify the factors associated with dementia and provide alternative treatment approaches. However, the question about continuing such life support treatment must be raised in aging patients with various conditions, including dementia and other mental disorders, which may impair communication and severe cardio-vascular disease. This process is reviewed by expert nephrologists according to the relevant clinical information, including underlying cause of kidney damage, indication of initiating dialysis, and laboratory and sonographic findings, to determine the need for long-term dialysis before approval. 2013;24(3):353–63. Validation of the Kidney Disease Quality of Life (KDQOL) cognitive function subscale. Since the subdistribution aHR of ESRD for risk of dementia is less than 1 (Table 3) and the inter-relationship between covariates in Cox models is with multiplicative effect, the effects of these risk factors for dementia might be attenuated in the ESRD population. Murray AM, Pederson SL, Tupper DE, Hochhalter AK, Miller WA, Li Q, Zaun D, Collins AJ, Kane R, Foley RN. Refusal by the patient would influence the course 58% of practitioners would take. Cookies policy. Only one interview was excluded. For 88% of the nephrologists interviewed, severe dementia was considered to be a condition that justified denying dialysis. They based their decision on a risk/benefit assessment, taking into account advantages and disadvantages: ‘what will be the benefit of dialysis for the patient?’ the nephrologists asked themselves. Medicines can be given for pain, anxiety, agitation or congestion.. Refusal to initiate haemodialysis is a decision made by the vast majority of nephrologists. Jassal SV, Devins GM, Chan CT, Bozanovic R, Rourke S. Improvements in cognition in patients converting from thrice weekly hemodialysis to nocturnal hemodialysis: a longitudinal pilot study. Pharmacoepidemiol Drug Saf. Acute variation in cognitive function in hemodialysis patients: a cohort study with repeated measures. Privacy Table S4. The relative hazard estimated from cause-specific models may be better suited for studying the etiology of diseases, whereas that derived from subdistribution models has been used to predict an individual’s risk or allocating resources [32, 33]. Depression and suicidal ideation in patients who discontinue the life-support-treatment of dialysis. 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. Figure S2. Google ScholarÂ. Nissenson AR. In France, the patient's refusal to continuing treatment is not taken into account. Article  Therefore, the relationship between the risk of dementia and ESRD might be confounded by these common risk factors in the ESRD population. Their reasons were then categorized into scientific and non-scientific factors. Nephrologists’ experience with and attitudes towards decisions to forego dialysis. dementia; dialysis; renal dialysis; Kidney Failure, Chronic; The authors present a study with findings that, in the world of hemodialysis, there is greater risk of diagnosed dementia and Alzheimer’s disease, which carries a twofold higher rate of mortality ().The number of patients initiating treatment over the age of 85 has increased steadily over the years. The practitioners then had an opportunity to discuss any regrets that may have developed with regard to the decisions they made to discontinue or to refuse dialysis or its discontinuation to elderly patients. A series of questions, initially open and then more targeted, regarding scientific and non-scientific factors influencing the decision to discontinue or refuse haemodialysis in elderly patients, were put to nephrologists. Experience with not offering dialysis to patients with a poor prognosis. I got stronger. Continuous variables were compared by Student’s t test, and comparisons of difference between categorical variables were analyzed by the chi-square test or Fisher exact test. Kurella M, Chertow GM, Luan J, Yaffe K. Cognitive impairment in chronic kidney disease. Procedural and clinical practice guidelines and general principles for withdrawing dialysis are published in UK [17], USA [18] and Canada [10]. But with regard to the principle of autonomy and freedom, US doctors are more relaxed, since death ‘is a result of the initial illness’. Investigation has demonstrated consensus in the decisions of physicians to refuse or discontinue haemodialysis. The fulfillment of assumption of proportional subdistribution hazards in Cox regression models was checked by log(−log(survival function)) versus log of survival time graph stratified by the covariate. However, both young and experienced nephrologists facing decisions to refuse to initiate haemodialysis refer, and will continue to refer, a patient to another colleague. Cognitive disorders, considered as a part of the dementia's manifestations occurring concurrently with severity of the disease and severe neurological disorders were, and are, the principal pathologies leading to the discontinuation of haemodialysis. 2002;13:628a. Age- and sex-specific incidence rates (IRs) and cumulative incidence rates (CIRs) were first compared between these two cohorts. In the ESRD population, patients were excluded if they had missing or extreme values of age or gender, received renal transplantation, or had a diagnosis of dementia before the identification of ESRD, or inconsistent mortality dates (Fig. 1). For full access to this pdf, sign in to an existing account, or purchase an annual subscription. Dialysis was discontinued in 155 (9 percent) of 1766 patients being treated for end-stage renal disease, accounting for 22 percent of all deaths. The provision of renal replacement therapy to elderly patients with ESRD has gone through two phases. The severity of multicollinearity between independent variables was evaluated by the variance inflation factors. The results from sensitivity analyses were robust and revealed similar results to the findings of the primary analyses. A decision clearly expressed by the patient to forego medical treatment was also designated as a circumstance justifying discontinuation or refusal of haemodialysis. J Epidemiol. Age and co-morbidity per se are contraindications for treatment. The claims’ information related to each beneficiary is recorded in detail and then maintained in the NHI Research Database after combining with the individuals’ demographic profiles (birth date, sex, place of residence). The principal non-scientific factors not to start haemodialysis were the refusal of the patient and quality of life (if major social disruption was involved). Although the main reasons for refusing dialysis were cognitive disorders, severe dementia and irreversible neurological conditions, none of these factors where actually found to be in and of themselves decisive. 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. In France, patients over 60 currently constitute over half of those requiring dialysis, though they constitute only a quarter of the French population. J Am Soc Nephrol. When individuals are associated with increased csHRs for the competing event, the value of the csHR of the interested event will be larger than that of the sdHR in these individuals because of the different modifications of risk sets of the cause-specific and subdistribution hazard models [32]. The prevalence of advanced directives among American haemodialysis patients is high, higher than in Germany or Japan [20]. Their number of years of experience in haemodialysis ranged from 4 years to 33 years (average, 20.7 years) (Table 1). The first one is the Longitudinal Health Insurance Datasets (LHID) 2000, which contains reimbursement records of 1 million beneficiaries selected by random sampling. To minimize these two potential biases, we performed the analysis again after excluding patients with CKD-ND in the non-ESRD population and adjusted the annual medical utilization as one of the covariates in the cause-specific and subdistribution hazard models. Stratified analysis of risk for dementia between the end-stage renal disease (ESRD) and non-ESRD population by using multivariable cause-specific hazard models. Article  In addition, various criteria for the identification of dementia were used in this study and produced essentially similar results, suggesting that the potential information bias is small and the study results are robustness. J Am Geriatr Soc. The epidemiology and impact of dementia - current state and future trends. The nephrologists interviewed stated that, from among the factors involved, severe dementia (15 out of 17 nephrologists), severe and irreversible neurological sequelae of stroke (14 out of 17) and, paradoxically, refusal by the patient (11 out of 17) would be foremost among the factors governing their decision to discontinue haemodialysis (Table 7). The aim of this study was to provide an ethical perspective for nephrologists [23], in line with the definition provided by Jean Bernard: ‘Ethics are the reflection upon and the discussion of principles’. All nephrologists practicing haemodialysis both within and outside dialysis units in the French regions of Loire-Atlantique, Vendée, Iles et Vilaines and Maine et Loire were contacted and interviewed. Kurella Tamura M, Covinsky KE, Chertow GM, Yaffe K, Landefeld CS, McCulloch CE. Available at: https://www.mohw.gov.tw/cp-137-522-2.html. Indeed, in these conditions, what is the aim of continuing dialysis treatment? 1997;30(1):41–9. JAMA. As clinicians we also may be uncomfortable taking away medications, as we are trained to always “do” something. Defeating Alzheimer’s disease and other dementias: a priority for European science and society. Winblad B, Amouyel P, Andrieu S, Ballard C, Brayne C, Brodaty H, Cedazo-Minguez A, Dubois B, Edvardsson D, Feldman H, et al. Elderly patients on dialysis face high risk of dementia | Hub If the person with dementia decides to stop taking a drug, they should speak to the doctor first if possible, or as soon as they can after stopping treatment. Doctors, philosophers, sociologists and economists are now assessing how this will affect the present and future needs of the elderly. Search for other works by this author on: IL fait que je vous dex … entiction avec Anterue Hers, © The Author [2005]. In the US, it is the patient who initiates the discussion to stop haemodialysis. Other illnesses were then focused upon by Brocker as factors potentially rendering renal dialysis futile: cancer, AIDS, terminal heart failure, pulmonary pathologies, peripheral vascular disease and incurable neurological diseases, such as Alzheimer's. Some patients having reached the stage where they decide not to embark on dialysis to treat their renal disease may live for one to two years without dialysis, but this varies and is often difficult to predict. They led a long fight, so that they could take control, especially of elderly persons with terminal kidney failure. CAS  Do families and physicians decide as patients do? 2013;66(6):648–53. Seliger SL, Longstreth WT Jr. Am J Kidney Dis. We appreciate the members of the Tainan RENal Disease Study (TRENDS) group for their comments to this study. Cumulative incidence rates of dementia after accounting for competing risk of mortality between patients with and without end-stage renal disease (ESRD), for which dementia is diagnosed by neurologists and psychiatrists. 2002;91(2):344–7. HR, hazard ratio; CI, confidence interval. It might explain why patients with ESRD are also inclined to develop a wide range of diverse neurological disorders, including cognitive impairment and dementia [8, 9]. 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 [4]. US studies report that discontinuation of haemodialysis is generally the first or second highest cause of death in elderly patients, and the third highest for younger patients [2]. Results from the multivariable cause-specific hazard models suggested that ESRD was one of the etiological factors for dementia (cause-specific hazard ratio [csHR] : 2.06 [95% CI : 1.95–2.17]). Kjellstrand MC. Finally, the practitioners were asked if they had obtained the patient's consent before each dialysis session. Clin J Am Soc Nephrol. Emmanuel EJ. 2014;24(6):500–7. In the subgroup analyses of people aged between 18 and 39 years old, the estimates of csHR for dementia and mortality were 2.23 (95% CI 1.37–3.65) and 2.75 (95% CI 2.51–3.01), respectively (data not shown in the table or figure). Ann Stat. Table S3. 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 1998–2010, 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. 1). All of the evidence demonstrates that ESRD patients are more likely to experience higher risk for cognitive impairments and thus supports our study results that ESRD and/or hemodialysis procedure is one of the etiological factors for dementia incidence. medical management; 3) a time-limited trial of dialysis, and 4) stopping dialysis and receiving end-of-life care. Subsequently, the potentially influential factors culled from our bibliographical research were presented to the practitioners for consideration. And if the questio… statement and The factors underlying such decisions are shown in Tables 2 and 3. In Canada, the proportion is over 40%. The decision must not give rise at a later stage to a sense of regret or guilt felt by those close to the patient or by the caregiving team: this was a finding of the study conducted on haemodialysis discontinuation in France [4]. In this study, we aimed to assess the attributable effect of ESRD on the etiology and cumulative incidence of dementia by using two nationally representative cohorts and competing risk analytical methods. Neu S, Kjellstrand CM. End-stage renal diseases in patients 75 and over: a new medical, socio-economic and ethical challenge. Practitioners viewed the patient both from a clinical and a social point of view. Moreover, the follow-up period is more than one decade, which is more than enough to assess the association between morbidities and incident dementia. 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. To be concrete, a stronger effect of the cause-specific hazard for all-cause mortality than for dementia in ESRD patients will result in an apparent decrease in the cumulative incidence for dementia. Patients’ wishes may not be overlooked in these countries. Uraemic encephalopathy is a complication of uraemia and responds well to dialysis. Once ESRD patients received renal transplantation during the follow-up period, they were also censored on the date of transplantation. The population of active nephrologists in the region can be characterized by their age, sex and number of years practicing haemodialysis. Neurology. The scientific factors influencing the decision not to offer haemodialysis were cognitive disorders and prognosis. It's generally agreed upon that patients might consider stopping dialysis if: 2  The patient also has an acute illness that will cause a great deal of … Dialysis Raises Hard Questions for Older Patients - The New York … Competing risk of death: an important consideration in studies of older adults. Lessons about brain vascular disease from another pulsating organ, the kidney. Moreover, even the studies investigating the association between non-dialysis-dependent chronic kidney disease (CKD-ND) and risk of cognitive decline revealed conflicting results [22]. recommended that renal dialysis be considered non-beneficial for patients with non-uraemic dementia, metastatic or refractory cancer, irreversible neurological diseases that significantly restrict mobility and daily activities, or multiple organ failures, and for patients for whom the provision of renal replacement treatment is technically impossible. However, before making this decision, it is important that you discuss it carefully with your loved ones and treatment team. 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). In fact there was nothing systematic about the decision-making process. In France the medical decision to forego dialysis is deemed legitimate only if there is both a major loss of autonomy and isolation from the family or from society [8]. n Those who have a terminal illness from non-renal causes (acknowledging that some in this Medical and non-medical factors were considered for discontinuation of haemodialysis in the same manner as for haemodialysis refusal. Fifth, we excluded the dementia cases diagnosed within the first 3 months following dialysis to avoid potential mis-ascertainment of dementia, because various medical conditions could lead to neurological complications soon after dialysis initiation. 2009;361(16):1539–47. By using this website, you agree to our All aspects of the situation (diagnosis, prognosis and social circumstances) must be discussed, including especially supportive terminal care if renal dialysis is withdrawn. Patients who have been on dialysis for … Among the multivariable subdistribution competing risk analysis, ESRD decreased the relative incidence of dementia by 49% but it increased the relative incidence of all-cause mortality by 251% (Table 3). It is, therefore, a decision with the most serious consequences. 2004;52(11):1863–9. The Poisson assumption was used to estimate age- and sex-specific IRs, and the corresponding 95% confidence intervals (CIs) were estimated by the exact method. In summary, this study demonstrated the high dementia burden in the ESRD population and showed that ESRD was one of the etiological factors for developing dementia. Sehgal AR, Grey SF, DeOreo PB, Whitehouse PJ. For the practitioners studied, cognitive disorders were the principal conditions leading to discontinuation of haemodialysis. Kurella M, Luan J, Yaffe K, Chertow GM. PubMed  For patients who are over 75, who have got lots of illnesses… dialysis isn’t guaranteed to make them live longer or feel better….those patients who have got a number of co-morbidities, so patients who have got heart failure, COPD, dementia… conservative management is very, very appropriate. I am a dialysis patient, and I love dialysis. Male subjects slightly dominated in the non-ESRD group, and the proportion of men and that of women were nearly identical in the ESRD group. However, the subdistribution HR (sdHR) of ESRD was 0.51 (95% Cl : 0.49–0.54), which indicated the lower cumulative incidence risk of dementia in ESRD patients. Cognitive impairment in the aging dialysis and chronic kidney disease populations: an occult burden. Cognitive disorders were, undeniably, the most significant factor influencing physicians’ refusal to start haemodialysis. J Formos Med Assoc. Birmelé B, François M, Pengloan J et al. This study has shown that refusing or discontinuing dialysis are practices accepted by the vast majority of nephrologists in one region of France. All authors read and approved the final manuscript. When constructing Cox regression models (Table 3, Fig. 3, Additional file 1: Table S4, and Additional file 1: Figures S2 and S3), multiple factors, including age, sex, diabetes mellitus, stroke, anemia, heart failure, hypertension, hyperlipidemia, coronary artery disease, peripheral vascular disease, malignancy, depression, obstructive sleep apnea, insomnia, alcoholism, traumatic brain injury, Parkinson’s disease, myocardial infarction, atrial fibrillation, hyperthyroidism, and hypothyroidism, were treated as covariates to reduce the potential confounding effect. Valderrabeno F, Jones EHP, Mallick NP. The large event numbers also allow adjustment for as many potential confounders as possible. If this occurs, it is important to know that you have the right to make the decision to stop dialysis. Krishnan AV, Pussell BA, Kiernan MC. Kalirao P, Pederson S, Foley RN, Kolste A, Tupper D, Zaun D, Buot V, Murray AM. One of the findings of our study was that the younger nephrologists respect this principle of freedom of choice [13]. Individuals were defined as having these comorbidities if the related diagnostic codes were identified once or more at inpatient care or twice or more at ambulatory care with a minimum interval of > 30 days within 1 year before enrollment. Hôpital Saint-Jacques, Maison Pirmil, Chu de Nantes, 85 rue Saint-Jacques, 44093 Nantes Cedex, France. Demographic and baseline characteristics of the end-stage renal disease (ESRD) and non-ESRD population in the sensitivity analyses, for which dementia is diagnosed by neurologists and psychiatrists. It acts as a representative cohort for more than 23.75 million people with insurance during 1996–2000. These responses are consistent with the statistics in the available literature [5,6]. However, this way of doing might have underestimated the incidence of dementia associated with ESRD. In Britain, Canada and the United States, the decision to discontinue haemodialysis is the principal cause of death among elderly patients on dialysis, especially among those over the age of 75. In most cases, a patient is allowed to eat or drink if they want to, but forcing fluids or nutrition is not recommended. Physical and psychological deterioration and cognitive disorders are the main factors governing the decision to discontinue haemodialysis in elderly patients. Given the increased life expectancy and aging of the population worldwide, the burden of dementia in the ESRD population is expected to increase, especially in Asia where the incidence rate of dementia is higher than other geographic areas [16]. 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. While many previous studies assessed the prevalence of dementia in the ESRD population, very few studies were carried out to investigate the incidence of dementia [20, 21]. Cuyvers E, Sleegers K. Genetic variations underlying Alzheimer’s disease: evidence from genome-wide association studies and beyond. Berry SD, Ngo L, Samelson EJ, Kiel DP. The doctor alone decides on and provides the treatment appropriate for the medical condition of the patient. Springer Nature. California Privacy Statement, As the mortality rates of ESRD patients are higher in the USA and Europe than in Taiwan, this effect might be more pronounced in these areas [38, 39]. The aim of this study was to analyse the practices of some French nephrologists, 17 of whom (in six nephrology units) were interviewed for this study. Conclusions. Google ScholarÂ. 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 [2]. in Dementia Patients (Part 1) Screaming is a behavioural problem that can be extremely overwhelming and create enormous stress, not only on other patients, but on staff as well. All agreed to participate and a face-to-face interview was planned. J Am Geriatr Soc. Consequently, such issues are not dealt with at the beginning of treatment. [6] clearly demonstrated that severe neurological sequelae of stroke constitute sufficient justification for nephrologists in the US to refuse or discontinue dialysis. Psychiatric disorders among patients undergoing hemodialysis therapy. Second, the identification of dementia or comorbidities was solely dependent on ICD-9 codes, and coding errors would thus potentially lead to information bias. (Specialist Nurse, Unit 8) Though it’s a natural part of the progression of the disease, there are several things you can do to try and halt its progress and help your loved one enjoy mealtimes and stay healthy for as long as possible. Google ScholarÂ. Dialysis outcomes and practice Patterns study the observational cohort study with repeated.!, 31 ( 2019 ) a comment on this article the epidemiology and impact of dementia and 2 30! Edition ( ICD-9 ) all statistical analyses were robust and revealed similar to! Dialysis compared with the statistics in the aging dialysis and receiving end-of-life.! To mortality was treated as censored to consider these confounders might overestimate the risk of over! Ms, Lin SJ, Lee CH, Lai ML slowly stop eating and.! Update for the female practitioners and seven male practitioners as censored,,! 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