This article surveys worldwide medical, ethical, and legal trends and initiatives related to the concept of pain management as a human right. This concept recently gained momentum with the 2004 European Federation of International Association for the Study of Pain (IASP) Chapters-, International Association for the Study of Pain- and World Health Organization-sponsored "Global Day Against Pain," where it was adopted as a central theme. We survey the scope of the problem of unrelieved pain in three areas, acute pain, chronic noncancer pain, and cancer pain, and outline the adverse physical and psychological effects and social and economic costs of untreated pain. Reasons for deficiencies in pain management include cultural, societal, religious, and political attitudes, including acceptance of torture. The biomedical model of disease, focused on pathophysiology rather than quality of life, reinforces entrenched attitudes that marginalize pain management as a priority. Strategies currently applied for improvement include framing pain management as an ethical issue; promoting pain management as a legal right, providing constitutional guarantees and statutory regulations that span negligence law, criminal law, and elder abuse; defining pain management as a fundamental human right, categorizing failure to provide pain management as professional misconduct, and issuing guidelines and standards of practice by professional bodies. The role of the World Health Organization is discussed, particularly with respect to opioid availability for pain management. We conclude that, because pain management is the subject of many initiatives within the disciplines of medicine, ethics and law, we are at an "inflection point" in which unreasonable failure to treat pain is viewed worldwide as poor medicine, unethical practice, and an abrogation of a fundamental human right.
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.
Background and objectives Survival, symptom burden, and quality of life (QOL) are uncertain for elderly patients with advanced CKD managed without dialysis. We examined these outcomes in patients managed with renal supportive care without dialysis (RSC-NFD) and those planned for or commencing dialysis.Design, setting, participants, & measurements In this prospective observational study, symptoms were measured using the Memorial Symptom Assessment Scale and the Palliative care Outcomes Scale -Symptoms (renal) inventory and QOL was measured using the Short Form-36 survey. This study comprised 273 predialysis patients who had usual nephrology care and 122 nondialysis pathway patients who also attended a renal supportive care clinic adding the skills of a palliative medicine team. A further 72 patients commenced dialysis during this period without attending either clinic.Results Nondialysis patients were older than the predialysis group (82 versus 67 years; P,0.001) but had similar eGFR at the first clinic visit (16 ml/min per 1.73 m 2 ; P=0.92). Of the predialysis patients, 92 (34%) commenced dialysis. Compared with the RSC-NFD group, the death rate was lower in the predialysis group who did not require dialysis (hazard ratio, 0.23; 95% confidence interval, 0.12 to 0.41] and in those requiring dialysis (0.30; 0.13 to 0.67) but not in dialysis patients who had not attended the predialysis clinic (0.60; 0.35 to 1.03). Median survival in RSC-NFD patients was 16 (interquartile range, 9, 37) months and 32% survived .12 months after eGFR fell below 10 ml/min per 1.73 m 2 . For the whole group, age, serum albumin, and eGFR ,15 ml/min per 1.73 m 2 were associated with poorer survival. Of the nondialysis patients, 57% had stable or improved symptoms over 12 months and 58% had stable or improved QOL.Conclusions Elderly patients who choose not to have dialysis as part of shared decision making survive a median of 16 months and about one-third survive 12 months past a time when dialysis might have otherwise been indicated. Utilizing the skills of palliative medicine helps provide reasonable symptom control and QOL without dialysis.
There are major disparities in the provision of palliative care around the world. In recent years, a statement of advocacy and objective has been repeatedly articulated that the provision of palliative care is a human right. This article examines the foundation for this assertion in the context of international human rights law. The strengths and weaknesses of this assertion are examined. The nature of both the right and, correlatively, the obligation on individual governments is discussed.
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.
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