[Show abstract][Hide abstract] ABSTRACT: Patients with advanced chronic kidney disease (CKD) have a high burden of physical and psychosocial symptoms, poor outcomes, and high costs of care. Current paradigms of care for this highly vulnerable population are variable, prognostic and assessment tools are limited, and quality of care, particularly regarding conservative and palliative care, is suboptimal. The KDIGO Controversies Conference on Supportive Care in CKD reviewed the current state of knowledge in order to define a roadmap to guide clinical and research activities focused on improving the outcomes of people living with advanced CKD, including those on dialysis. An international group of multidisciplinary experts in CKD, palliative care, methodology, economics, and education identified the key issues related to palliative care in this population. The conference led to a working plan to address outstanding issues in this arena, and this executive summary serves as an output to guide future work, including the development of globally applicable guidelines.
[Show abstract][Hide abstract] ABSTRACT: Patients with advanced chronic kidney disease (CKD) have a high burden of physical and psychosocial symptoms, poor outcomes, and high costs of care. Current paradigms of care for this highly vulnerable population are variable, prognostic and assessment tools are limited, and quality of care, particularly regarding conservative and palliative care, is suboptimal. The KDIGO Controversies Conference on Supportive Care in CKD reviewed the current state of knowledge in order to define a roadmap to guide clinical and research activities focused on improving the outcomes of people living with advanced CKD, including those on dialysis. An international group of multidisciplinary experts in CKD, palliative care, methodology, economics, and education identified the key issues related to palliative care in this population. The conference led to a working plan to address outstanding issues in this arena, and this executive summary serves as an output to guide future work, including the development of globally applicable guidelines.Kidney International advance online publication, 29 April 2015; doi:10.1038/ki.2015.110.
Kidney International 04/2015; DOI:10.1038/ki.2015.110 · 8.52 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Patients with advanced kidney disease come from diverse ethnic, cultural and religious backgrounds. This potentially causes conflict when considering end-of-life management for patients from minority ethnic groups in a Western healthcare system that is dominated by the principles of patient autonomy, beneficence, non-maleficence and avoiding futile care. This article explores the impact of religion and culture on truth telling and futile care at end of life.
Journal of Renal Care 09/2014; 40 Suppl 1(S1):2-5. DOI:10.1111/jorc.12083
[Show abstract][Hide abstract] ABSTRACT: South Asian people have a higher risk of developing kidney disease, are disproportionately represented in the patient population requiring renal replacement therapy and wait longer to receive a kidney transplant, compared with white Europeans. As a result, there is a demand for end-of-life care, which meets the needs of this group of patients. Providing end-of-life care to patients from different cultures is a challenge for renal services as there can be barriers to communication in the form of language, delegated decision-making within families and reluctance to discuss death. To explore end-of-life care for South Asians with kidney disease, 16 interviews with patients and 14 focus groups with care providers were conducted at four research sites in the UK with large South Asian populations. Using an action research design the data were analysed thematically and fed back to inform the research in a cyclical manner. If patients are not fully aware of their condition or of what end-of-life care is, it is less likely that they will be able to be involved in decision-making about their care and this is compounded where there are communication barriers. Variations in care provider awareness and experience of providing end-of-life care to South Asian patients, in turn, contributes to lack of patient awareness of end-of-life care. Communication as care at the end of life should be explored further. Researching the South Asian patient experience of end of life highlights many relevant and generalisable issues.
Journal of Renal Care 09/2014; 40 Suppl 1(S1):23-9. DOI:10.1111/jorc.12084
[Show abstract][Hide abstract] ABSTRACT: The incidence of older patients with end stage renal disease is on the increase. This group of patients have multiple comorbidities and a high symptom burden. Dialysis can be life sustaining for such patients. But it is often at the expense of quality of life, which starts to decline early in the pathway of chronic kidney disease. Quality of life is also important to patients and is a major determinant in decisions regarding renal replacement. As a result, validated patient-reported outcome measures are increasingly used to assess quality of life in renal patients. Cognitive impairment, depression, malnutrition and function decline are non-renal determinants of quality of life and mortality. They are under-recognised in the renal population but are potentially treatable, if not preventable. This review article discusses aetio-pathogenesis, prevalence and impact of these four outcomes, advocating regular screening for early identification and management.
Postgraduate medical journal 03/2014; 90(1064). DOI:10.1136/postgradmedj-2013-132251 · 1.55 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Encapsulating peritoneal sclerosis (EPS) is a rare but devastating complication of long-term peritoneal dialysis (PD). There is no well-validated method for predicting which patients will develop the condition, although known risk factors include long duration of PD, high glucose exposure and lack of residual renal function. We have investigated whether dialysate cytokines (MCP-1 (monocyte chemotactic protein-1), CCL18 (pulmonary and activation-regulated cytokine, PARC), IL-6 (interleukin-6), CCL15 (leukotactin) and angiogenin) could be used to predict the onset of EPS more effectively than known clinical risk factors. ♢ METHODS: Samples of dialysate and clinical data were prospectively collected from 151 patients at the West London Renal center between 2003 and 2010. Dialysate cytokine levels were measured using the enzyme-linked immunoabsorbant assay (ELISA) technique. Encapsulating peritoneal sclerosis subsequently developed in 17 patients during a follow-up period of 27 - 113 months. Cytokines found at higher levels in dialysate of pre-EPS patients were investigated as candidate predictors of EPS using logistic regression analysis. ♢ RESULTS: Dialysate IL-6, MCP-1 and CCL15 were significantly higher in patients who subsequently developed EPS; however, a logistic regression model using dialysate cytokines to predict EPS was no better than a model using well-recognized clinical markers (length of time on PD and membrane transport status). ♢ CONCLUSIONS: Although MCP-1, IL-6 and CCL15 were found at higher levels in the dialysate of patients who subsequently developed EPS, dialysate levels of these cytokines do not improve prediction of future EPS above a model using known clinical risk factors.
[Show abstract][Hide abstract] ABSTRACT: Encapsulating peritoneal sclerosis (EPS), a rare but serious complication of long-term PD, is characterized by nausea, abdominal pain, weight loss, anorexia, and constipation. It can cause a significant deterioration in a patient's nutrition status. In the present study we examined changes in nutrition status and outcomes for patients with EPS treated conservatively without the use of surgical intervention.
Patients diagnosed with EPS at our institution between December 2006 and December 2010 were identified, and data on demographics, nutrition, and symptoms were collected every 2 months for 12 months and then at 18 and 24 months.
Of the 15 patients identified, 12 were malnourished or at risk of malnutrition according to their subjective global assessment score, with 11 of the 15 presenting with more than 10% weight loss in the 6 months before diagnosis. Furthermore, symptom burden was high, with 11 of 15 patients reporting 2 or more gastrointestinal symptoms. Of the 15 patients, 12 required parenteral nutrition for a median of 4.5 months, and 5 died within the first 12 months after diagnosis. In the 10 survivors, albumin and C-reactive protein significantly improved over the 24 months after diagnosis. Improving trends in weight and symptoms were also observed in those patients.
In some patients with EPS, a conservative approach without surgical intervention, and with regular dietetic input and aggressive nutrition support, can lead to improved nutrition status and symptoms.
[Show abstract][Hide abstract] ABSTRACT: Increasing numbers of frail elderly with end-stage renal disease (ESRD) and multiple comorbidities are undertaking dialysis treatment. This has been accompanied by increasing dialysis withdrawal, thus warranting investigation into why this is occurring and whether a different approach to choosing treatment should be implemented. Despite being a potentially life-saving treatment, the physical and psychosocial burdens associated with dialysis in the frail elderly usually outweigh the benefits of correcting uraemia. Conservative management is less invasive and avoids the adverse effects associated with dialysis, but unfortunately it is often not properly considered until patients withdraw from dialysis. Shared decision-making has been proposed to allow patients active participation in healthcare decisions. Through this approach, patients will focus on their personal values to receive appropriate treatment, and perhaps opt for conservative management. This may help address the issue of dialysis withdrawal. Moreover, shared decision-making attempts to resolve the conflict between autonomy and other ethical principles, including physician paternalism. Here, we explore the ethical background behind shared decision-making, and whether it is genuinely in the patient's best interests or whether it is a cynical solution to encourage more patients to consider conservative care, thus saving limited resources.
[Show abstract][Hide abstract] ABSTRACT: OBJECTIVE: To explore the relationship between nutritional parameters and psychosocial factors in older people on dialysis. DESIGN: A cross-sectional observational study in prevalent older people on hemodialysis (HD) and peritoneal dialysis (PD). SETTING: A secondary analysis from a quality of life study in older people (Broadening Options for Long-term Dialysis in the Elderly). SUBJECTS: One-hundred and six patients 65 years of age or older and on dialysis for at least 90 days were purposively recruited (HD patients matched to PD patients by age, sex, dialysis vintage, ethnicity and Index of Deprivation). Half were on HD, the mean age was 72.7 years, 72% were male, 92% were from a White ethnic background, and 26% had diabetes. INTERVENTION: The patients attended one visit at which they completed nutritional assessments (3-day food diary, subjective global assessment, handgrip strength, and body mass index) and questionnaires: Short Form-12 (SF-12), the Hospital Anxiety and Depression Scale (HADS), the Mini Mental State Exam, and social networks. MAIN OUTCOME MEASURES: The differences in nutritional parameters between patients on PD and HD were determined by univariate analyses, and the relationships between nutritional intake and demographic, clinical, and psychosocial variables were determined by multivariate analyses. RESULTS: There was no difference in the energy and protein intake and nutritional status between older people on HD and PD. For the whole sample, multivariate analyses found that lower energy intake was related to fewer social networks (P = .002) and lower SF-12 Physical Component Scale (PCS) scores (P = .021). A lower protein intake was related to worsening Index of Deprivation scores (P = .028) and an interaction between SF-12 PCS and presence of possible depression (P = .015). CONCLUSION: Energy and protein intake in older people (regardless of modality) appears to be independently associated with psychosocial variables.
[Show abstract][Hide abstract] ABSTRACT: Patients with chronic kidney disease, particularly those with diabetes, often have a heavy burden of vascular comorbidity and hence a poor overall prognosis. Unfortunately, patients and their healthcare teams often have unrealistic expectations about outcomes and receive ineffective and often harmful interventions towards their end of life. We need to move away from death being perceived as a failure and realise, instead, that our goal of care at the end of life is to achieve as good a quality of life for the patient as possible. To be able to achieve this, it is important to be realistic about prognosis, be able to recognise predictors of poor outcome and then be able to discuss these with the patient and their family to ensure symptom control, avoid interventions that could do harm and then as the end approaches, determine the wishes of the patient regarding preferred place of care for their inevitable death.
Journal of Renal Care 02/2012; 38 Suppl 1:138-44. DOI:10.1111/j.1755-6686.2012.00271.x
[Show abstract][Hide abstract] ABSTRACT: Truth telling, a cardinal rule in Western medicine, is not a globally shared moral stance. Honest disclosure of terminal prognosis and diagnosis are regarded as imperative in preparing for the end of life. Yet in many cultures, truth concealment is common practice. In collectivist Asian and Muslim cultures, illness is a shared family affair. Consequently, decision making is family centred and beneficence and non-malfeasance play a dominant role in their ethical model, in contrast to patient autonomy in Western cultures. The 'four principles' are prevalent throughout Eastern and Western cultures, however, the weight with which they are considered and their understanding differ. The belief that a grave diagnosis or prognosis will extinguish hope in patients leads families to protect ill members from the truth. This denial of the truth, however, is linked with not losing faith in a cure. Thus, aggressive futile treatment can be expected. The challenge is to provide a health care service that is equable for all individuals in a given country. The British National Health Service provides care to all cultures but is bound by the legal principles and framework of the UK and aims for equity of provision by working within the UK ethical framework with legal and ethical norms being explained to all patients and relatives. This requires truth telling about prognosis and efficacy of potential treatments so that unrealistic expectations are not raised.
[Show abstract][Hide abstract] ABSTRACT: Despite a recent increased awareness of the need for quality End of Life (EOL) care for patients with advanced kidney disease, there is no established method for measuring or auditing outcomes relating to EOL care in this population.
We designed a one-page proforma, which was used to collect data on various aspects of EOL care relating to all deaths of patients on dialysis and patients dying on specialist renal wards, over a predefined 8-week period in 10 hospitals in London and South-East England.
One hundred and thirty-eight deaths were recorded over the 8-week study period. The majority of patients (83%) were receiving maintenance haemodialysis prior to their terminal presentation. About 69% of deaths occurred during an in-patient hospital admission-of these, 36% were considered 'unexpected' and most quality markers of good EOL management were significantly less likely to be achieved in these patients, including use of palliative care strategies, good symptom control and overall quality of death. Thirty-six per cent of patients were from various ethnic minorities, and in this group, there was a trend towards lower use of palliative care pathways and lower rates of withdrawal from dialysis.
This study confirms that it is possible to measure many important outcomes relating to quality of EOL care using a proforma completed at the time of death. Our findings suggest that many aspects of good EOL care are under-achieved in our region. This, in part, is due to a failure to recognize the worsening trajectory of the deteriorating patient, resulting in missed opportunities for EOL care planning and appropriate symptom control. Our observations suggest that there is a need for improved education and training in this area, particularly in detection of the dying patient, the value of advance care planning and the utility of tools such as the Liverpool Care Pathway.
[Show abstract][Hide abstract] ABSTRACT: Elderly patients with end-stage renal disease (ESRD) are at increased risk of developing aging-related problems, such as frailty, impaired physical function, falls, poor nutrition and cognitive impairment. These factors affect dialysis outcomes, which can be very poor in frail, elderly patients who often experience a decline in overall health and physical function and have short survival. The default treatment option for these patients is hospital-based hemodialysis, often with little consideration of how this modality will affect the survival or quality of life of individual patients. A comparison of quality of life of elderly patients on hemodialysis versus peritoneal dialysis shows that those on peritoneal dialysis have less illness intrusion. Assisted peritoneal dialysis enables a greater number of frail, elderly patients to have dialysis in their own homes. Dialysis may not extend survival for those with multiple comorbidities, so conservative care (nondialysis treatment) should be considered. To improve the outcomes of elderly patients with ESRD, it is necessary to develop a realistic approach to overall prognosis, quality of life and how the patient copes with the disabilities associated with aging. This approach includes having discussions regarding choice of treatment and end-of-life goals with patients and families.
[Show abstract][Hide abstract] ABSTRACT: The numbers of older patients requiring dialysis therapy is rising, reflecting the ageing of the general population. Older dialysis patients have a tendency to present later for dialysis, have a higher number of comorbid conditions, are at higher risk of cognitive dysfunction and have increased levels of frailty. These are all barriers to home dialysis therapy so hospital haemodialysis (HD) is the predominant dialysis modality for older patients. Evidence suggests, however, that home treatment with peritoneal dialysis (PD) intrudes less into the life of older patients than hospital HD. Assisted PD is available in some countries and this enables more older patients to be treated in their own homes. Adjustments to patient education also need to be made to accommodate the barriers to learning and decision-making that often exist in older people.
[Show abstract][Hide abstract] ABSTRACT: We previously validated a scoring system for abdominal/pelvic CT scans in patients with symptomatic encapsulating peritoneal sclerosis (EPS). CT scans of patients with symptomatic EPS were significantly different from control peritoneal dialysis (PD) or haemodialysis patient scans; scans performed before EPS was clinically evident were near normal in 9 of 13 patients. We have now investigated CT scanning as a screening modality in a larger group of patients on long-term PD.
Pre-diagnostic CT scans performed in 20 patients for routine screening or other indications at least 3 months before EPS developed, and later diagnostic scans when EPS was clinically evident, were scored by three radiologists. The control group included CT scans of 20 PD patients who had not developed EPS (median follow-up 2.25 years). Analysis was by non-parametric tests. CT scores ranged from 0 to 22; > 2.5 was considered abnormal.
Clinical EPS only developed after transplantation or transfer to HD. Diagnostic scans scored significantly higher than pre-diagnostic or control scans (median scores 9, 2 and 1; P < 0.001), confirming previous work. The pre-EPS diagnosis of 12 asymptomatic patients had a median CT score = 1.75, similar to the control group. Eight patients had had a limited episode of abdominal symptoms (seven required hospitalization), but did not have the clinical picture of EPS; their median CT score was 4.5 (P = 0.0016 cf control group). The time from pre-diagnostic scan to clinical EPS (median 0.82 years) and duration of PD at time of pre-diagnostic scan (median 7.1 years) did not differ significantly between the symptomatic and asymptomatic groups.
CT screening of asymptomatic PD patients is not indicated; EPS may occur within a year or less of a normal CT scan. Abdominal symptoms in long-term PD patients can be associated with CT scan abnormalities; these patients are at increased risk of EPS after stopping PD.
[Show abstract][Hide abstract] ABSTRACT: Encapsulating peritoneal sclerosis (EPS) is a rare complication of peritoneal dialysis (PD), but carries significant morbidity and mortality. We review the clinical features and radiologic and histologic changes found at diagnosis of EPS. Although EPS is strongly associated with the duration of PD, the pathogenesis remains only partly understood. We discuss the mechanisms thought to underlie the abnormally thickened, sclerotic peritoneal membrane seen in long-term PD patients including epithelial to mesenchymal transition and the molecular mediators of fibrosis and angiogenesis. We review how exposure to high-glucose, nonphysiological dialysis fluids, peritonitis, and uremia may be responsible for these changes. Much remains to be learned about optimal management of EPS, both medical and surgical, because the literature lacks controlled studies. Future research challenges include defining the role of surgery, immunosuppression, and antifibrotic agents in the management of EPS. We also need to understand why some patients progress from asymptomatic peritoneal sclerosis to the extreme levels of fibrin deposition and bowel encapsulation seen in EPS. Screening PD patients for potential future EPS remains difficult, and we need strategies for monitoring patients on longer-term PD that enable us to better quantify the risk of EPS for the individual patient.
Seminars in Nephrology 03/2011; 31(2):183-98. DOI:10.1016/j.semnephrol.2011.01.007 · 2.94 Impact Factor