Sara N. Davison

Executive summary of the KDIGO Controversies Conference on Supportive Care in Chronic Kidney Disease: developing a roadmap to improving quality care

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.

Independent Effects of Systemic and Peritoneal Inflammation on Peritoneal Dialysis Survival

Systemic inflammation, as evidenced by elevated inflammatory cytokines, is a feature of advanced renal failure and predicts worse survival. Dialysate IL-6 concentrations associate with variability in peritoneal small solute transport rate (PSTR), which has also been linked to patient survival. Here, we determined the link between systemic and intraperitoneal inflammation with regards to peritoneal membrane function and patient survival as part of the Global Fluid Study, a multinational, multicenter, prospective, combined incident and prevalent cohort study (n=959 patients) with up to 8 years of follow-up. Data collected included patient demographic characteristics, comorbidity, modality, dialysis prescription, and peritoneal membrane function. Dialysate and plasma cytokines were measured by electrochemiluminescence. A total of 426 survival endpoints occurred in 559 incident and 358 prevalent patients from 10 centers in Korea, Canada, and the United Kingdom. On patient entry to the study, systemic and intraperitoneal cytokine networks were dissociated, with evidence of local cytokine production within the peritoneum. After adjustment for multiple covariates, systemic inflammation was associated with age and comorbidity and independently predicted patient survival in both incident and prevalent cohorts. In contrast, intraperitoneal inflammation was the most important determinant of PSTR but did not affect survival. In prevalent patients, the relationship between local inflammation and membrane function persisted but did not account for an increased mortality associated with faster PSTR. These data suggest that systemic and local intraperitoneal inflammation reflect distinct processes and consequences in patients treated with peritoneal dialysis, so their prevention may require different therapeutic approaches; the significance of intraperitoneal inflammation requires further elucidation.

Withholding and Withdrawal from Dialysis: What We Know About How Our Patients Die

Withholding and withdrawal of dialysis has been a reality since dialysis was invented. Only in the past 20 years has it been formally studied, and we still have a great deal to learn. The nephrology community has slowly come to accept that, for some of our patients, not having dialysis is a better option than continuing or initiating therapy. The principles of palliative care throughout the disease trajectory and hospice care at end of life are germane to this population due to its high symptom burden and mortality rate. We review what is currently known concerning patients who choose to withhold or withdraw from dialysis, and the current barriers (and solutions) to providing them with optimal palliative care.

Withdrawal from dialysis: A palliative care perspective.

A retrospective chart review was conducted in this pilot study of 35 patients who withdrew from dialysis and were followed by a palliative care team. Data included etiology of end-stage renal disease, comorbid illnesses, mode of dialysis and duration, survival time after withdrawal, reason for withdrawal, mental competency, symptom management, and the nature of death. Mean survival time was 10 days. The most frequent symptoms following withdrawal were confusion, agitation, pain and dyspnea. 1/3 of the sample were cognitively impaired at the time of the withdrawal decision. 17% experienced suffering during the withdrawal period, 24% had unrelieved symptoms, 19% psychological distress, while just over 1/3 of patients died alone. With the provision of palliative care, symptom prevalence in the last 24 hours dropped from 53 to 20% for pain, 68 to 33% for agitation and 46 to 26% for dyspnea. Opioids and benzodiazepines were used in the treatment of over 90% of patients. Palliative medicine has the potential to improve the care of patients who discontinue dialysis.

CLINICAL PRACTICE GUIDELINES AND RECOMMENDATIONS ON PERITONEAL DIALYSIS ADEQUACY 2011

Division of Nephrology,1 University of Western Ontario, London, Ontario; Division of Nephrology,2 University of Toronto, Toronto, Ontario; Division of Nephrology,3 McMaster University, Hamilton, Ontario; Division of Nephrology and Transplant Immunology,4 University of Alberta, Edmonton, Alberta; Division of Nephrology,5 Dalhousie University, Halifax, Nova Scotia; Division of Nephrology,6 University of Ottawa, Ottawa, Ontario; Division of Nephrology,7 University of British Columbia, Vancouver, British Columbia, Canada

When Enough Is Enough: The Nephrologist's Responsibility in Ordering Dialysis Treatments

For more than 20 years, nephrologists have been reporting that they are increasingly being expected to dialyze patients whom they believe may receive little benefit from dialysis therapy. During this time, there has been substantial research about the outcomes of patients of differing ages and comorbid conditions requiring dialysis and the development of clinical practice guidelines for dialysis decision making based on research evidence, ethics, and the law. The importance of palliative medicine to the care of the patient throughout the continuum of kidney disease also has been recognized, and its application has been described. This article summarizes these advances and provides an approach for decision making and treatment for patients who are not likely to benefit from dialysis therapy.

Existential and Religious Dimensions of Spirituality and Their Relationship with Health-Related Quality of Life in Chronic Kidney Disease

BACKGROUND AND OBJECTIVES Spiritual aspects of health-related quality of life (HRQoL) in patients with chronic kidney disease (CKD) have not been fully assessed. This study described the religious and existential dimensions of spirituality of patients with CKD, provided evidence to support construct validity of the ESRD Spiritual Beliefs Scale, and examined the relationship between constructs of spirituality and HRQoL. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS This was a prospective, cohort study of 253 predominantly white (81.5%) prevalent patients with stage 4 or 5 CKD or receiving long-term dialysis. Participants completed the Kidney Dialysis Quality of Life Short Form, the ESRD Spiritual Beliefs Scale, the Spiritual Perspective Scale, and the Spiritual Well-Being Scale. RESULTS Three subscales of ESRD Spiritual Beliefs Scale were highly correlated with other measures of religiosity and weakly correlated with existential well-being. Mean of three subscales of ESRD Spiritual Beliefs Scale and overall Spiritual Perspective Scale scores were 8.8 to 9.9 and 3.3, respectively. Mean ± SD existential and religious scores of the Spiritual Well-Being Scale were 42.9 ± 8.8 and 38.8 ± 11.4, respectively. Negligible correlations existed between religious scores and HRQoL. Conversely, existential well-being was moderately associated with several domains of HRQoL. CONCLUSIONS Our study supports construct validity of the ESRD Spiritual Beliefs Scale as a measure of religiosity. It did not seem to capture the existential dimension of spirituality. The existential domain of spirituality was more clinically relevant to patients in this study and had a greater impact on HRQoL compared with measures of religiosity.

The Ethics of End-of-Life Care for Patients with ESRD

Patients with ESRD have extensive and unique palliative care needs, often for years before death. The vast majority of patients, however, dies in acute care facilities without accessing palliative care services. High mortality rates along with a substantial burden of physical, psychosocial, and spiritual symptoms and an increasing prevalence of decisions to withhold and stop dialysis all highlight the importance of integrating palliative care into the comprehensive management of ESRD patients. The focus of renal care would then extend to controlling symptoms, communicating prognosis, establishing goals of care, and determining end-of-life care preferences. Regretfully, training in palliative care for nephrology trainees is inadequate. This article will provide a conceptual framework for renal palliative care and describe opportunities for enhancing palliative care for ESRD patients, including improved chronic pain management and advance care planning and a new model for delivering high-quality palliative care that includes appropriate consultation with specialist palliative care.

Pain in chronic kidney disease: a scoping review.

There is increasing international attention in efforts to integrate palliative care principles, including pain and symptom management, into the care of patients with advanced chronic kidney disease (CKD). The purpose of this scoping review was to determine the extent, range, and nature of research activity around pain in CKD with the goal of (i) identifying gaps in current research knowledge; (ii) guiding future research; and (iii) creating a rich database of literature to serve as a foundation of more detailed reviews in areas where the data are sufficient. This review will specifically address the epidemiology of pain in CKD, analgesic use, pharmacokinetic data of analgesics, and the management of pain in CKD. It will also capture the aspects that pertain to specific pain syndromes in CKD such as peripheral neuropathy, carpal tunnel syndrome, joint pain, and autosomal dominant polycystic kidney disease.

Patient and health professional preferences for organ allocation and procurement, end-of-life care and organization of care for patients with chronic kidney disease using a discrete choice experiment

BACKGROUND Clinical practice, policy and research, and the ethical bases upon which they are founded, should be systematically and transparently informed by both patient and professional values. METHODS A discrete choice experiment was utilized to understand and quantify the preferences of 351 Canadian patients and healthcare providers in relation to ethically challenging aspects of the management of chronic kidney disease (CKD): procurement and allocation of organs for transplantation, end-of-life care discussions and decision making and the identities of those providing primary care. RESULTS Patients and health professionals had clear preferences for detailed prognostic information, early advance care planning, shared end-of-life decision making, coordinated models of care that enhance interaction and communication between primary and tertiary care and a more utilitarian approach of best match over first come, first served for allocating deceased donor kidneys. These data also suggest that the innovative strategies of non-directed anonymous donation and paired kidney exchange that are slowly being implemented internationally will be acceptable to both patients and healthcare providers. CONCLUSIONS Current models of CKD care do not consistently reflect the preferences or priorities of either health professionals or patients.