Pain is common and poorly managed in patients with advanced CKD, likely due to both under and over prescription of appropriate analgesics. Poorly managed pain contributes to patients' poor quality of ...life and excessive health care use. There is tremendous variability within and between countries in prescribing patterns of analgesics, suggesting that factors other than patient characteristics account for these differences. This article discusses the pharmacologic management of acute and chronic pain in patients with advanced CKD, and the role analgesics, including opioids, play in the overall approach to pain management.
Despite high mortality rates, surprisingly little research has been done to study chronic kidney disease (CKD) patients' preferences for end-of-life care. The objective of this study was to evaluate ...end-of-life care preferences of CKD patients to help identify gaps between current end-of-life care practice and patients' preferences and to help prioritize and guide future innovation in end-of-life care policy.
A total of 584 stage 4 and stage 5 CKD patients were surveyed as they presented to dialysis, transplantation, or predialysis clinics in a Canadian, university-based renal program between January and April 2008.
Participants reported relying on the nephrology staff for extensive end-of- life care needs not currently systematically integrated into their renal care, such as pain and symptom management, advance care planning, and psychosocial and spiritual support. Participants also had poor self-reported knowledge of palliative care options and of their illness trajectory. A total of 61% of patients regretted their decision to start dialysis. More patients wanted to die at home (36.1%) or in an inpatient hospice (28.8%) compared with in a hospital (27.4%). Less than 10% of patients reported having had a discussion about end-of-life care issues with their nephrologist in the past 12 months.
Current end-of-life clinical practices do not meet the needs of patients with advanced CKD.
Dialysis care is often associated with poor outcomes including low quality of life (QOL). To improve patient-reported outcomes, incorporation of the patient's needs and perspective into the medical ...care they receive is essential. This article provides a framework to help clinicians integrate symptom assessment and other measures such as QOL and frailty scores into a clinical approach to the contemporary supportive care of patients with advanced CKD. This approach involves (
) defining our understanding of kidney supportive care, patient-centered dialysis, and palliative dialysis; (
) understanding and recognizing common symptoms associated with advanced CKD; (
) discussing the concepts of physical function, frailty, and QOL and their role in CKD; and (
) identifying the structural and process barriers that may arise when patient-centered dialysis is being introduced into clinical practice.
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.
Comprehensive care of patients with ESRD requires expertise in advance care planning (ACP), including attention to ethical, psychosocial, and spiritual issues related to starting, continuing, ...withholding, and stopping dialysis. However, there are no standards of care regarding when to initiate or how to facilitate ACP. The purpose of this study was to determine the perspectives of patients with ESRD of the salient elements of ACP discussions. An ethnographic, qualitative, in-depth interview study was conducted of outpatients of a university-affiliated nephrology program. Twenty-four patients with ESRD were purposively selected from the renal insufficiency, hemodialysis, and peritoneal dialysis clinics. Establishing patient "buy-in" by identifying perceived benefits of ACP along with acknowledging patients' sense of personal empowerment were critical both for the effective framing of facilitated ACP and for determining patients' ability to participate in facilitated ACP. Patients required more information and earlier initiation of ACP discussions. Information needed to focus more on the individual and how his or her illness and interventions would affect his or her life and relationships and what he or she values most. Empathetic listening also was viewed as an integral component of facilitated ACP. Physicians clearly were seen as having the responsibility for initiating and guiding ACP. The role of patients and family within ACP is complex and varies significantly between patients. For most, family was an integral component of ACP, and many relied extensively on family to make end-of-life decisions. These findings identify a precarious tension between patients' preferences in terms of facilitated ACP and current clinical practice.
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.
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.
Objective To understand hope in the context of advance care planning from the perspective of patients with end stage renal disease. Design Qualitative in-depth interview study. Setting Outpatient ...department of a university affiliated nephrology programme. Participants 19 patients with end stage renal disease purposively selected from the renal insufficiency, haemodialysis, and peritoneal dialysis clinics. Results Patients' hopes were highly individualised and were shaped by personal values. They reflected a preoccupation with their daily lives. Participants identified hope as central to the process of advance care planning in that hope helped them to determine future goals of care and provided insight into the perceived benefits of advance care planning and their willingness to engage in end of life discussions. More information earlier in the course of the illness focusing on the impact on daily life, along with empowerment of the patient and enhancing professional and personal relationships, were key factors in sustaining patients' ability to hope. This helped them to imagine possibilities for a future that were consistent with their values and hopes. The reliance on health professionals to initiate end of life discussions and the daily focus of clinical care were seen as potential barriers to hope. Conclusions Facilitated advance care planning through the provision of timely appropriate information can positively enhance rather than diminish patients' hope. Current practices concerning disclosure of prognosis are ethically and psychologically inadequate in that they do not meet the needs of patients.
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