Supportive care for end-stage kidney disease: an integral part of kidney services across a range of income settings around the world

Abstract

A key component of treatment for all people with advanced kidney disease is supportive care, which aims to improve quality of life and can be provided alongside therapies intended to prolong life, such as dialysis. This article addresses the key considerations of supportive care as part of integrated end-stage kidney disease care, with particular attention paid to programs in low- and middle-income countries. Supportive care should be an integrated component of care for patients with advanced chronic kidney disease, patients receiving kidney replacement therapy (KRT), and patients receiving non-KRT conservative care. Five themes are identified: improving information on prognosis and support, developing context-specific evidence, establishing appropriate metrics for monitoring care, clearly communicating the role of supportive care, and integrating supportive care into existing health care infrastructures. This report explores some general aspects of these 5 domains, before exploring their consequences in 4 health care situations/settings: in people approaching end-stage kidney disease in high-income countries and in low- and middle-income countries, and in people discontinuing KRT in high-income countries and in low- and middle-income countries.

Keywords: conservative care; end-stage kidney disease; palliative care; supportive care.

Figure 1

Components of care received by individuals with kidney disease, conceptualized as preventive (light-blue), management of underlying kidney pathology (mid-yellow), and supportive (dark-green). Contributions of care components are shown in 4 hypothetical settings: 2 high-income, 1 middle-income, and 1 low-income, and are interpretable as countries, regions, or treatment centers. In setting 1, greater total and proportional investment has been made in managing kidney disease (e.g., dialysis services) than in settings 2, 3, or 4. In setting 2, greater emphasis on preventive and supportive care is delivered. In setting 3, preventive treatment and management of kidney disease are funded, but supportive care has not yet been funded. In setting 4, preventive treatment represents a greater proportion of service delivered than in settings 1, 2, and 3, although it receives less investment in absolute terms. Management of kidney disease (e.g., dialysis) is unavailable in setting 4. Data are from White SL, Chadban SJ, Jan S, et al. How can we achieve global equity in provision of renal replacement therapy? Bull World Health Organ. 2008;86:229–237.

Figure 2

Supportive care as part of integrated kidney care. Arrow between conservative care and kidney replacement therapy (KRT) indicates individuals switching their treatment approach. Those with end-stage kidney disease who stop KRT receive supportive care at the end of life, not conservative care, which is provided to individuals reaching the end stage as either a chosen or choice-restricted therapy. AKI, acute kidney injury; CKD, chronic kidney disease; HD, hemodialysis; PD, peritoneal dialysis; Tx, transplantation.

Figure 3

Hypothetical patient journey showing variation in components of kidney care with disease/time progression. In this example, a patient already is receiving cardiovascular risk management when their chronic kidney disease (CKD) is diagnosed. CKD care then is added. At a later date, supportive care is added for symptom control. Sometime later they start kidney replacement therapy (KRT). Later again, a deterioration triggers deprescribing of preventive care and subsequently a choice to withdraw from dialysis. Supportive care is continuous through CKD, end-stage kidney disease (ESKD)/KRT, end-of-life, and bereavement phases. Light-blue boxes, preventive care; yellow boxes, kidney care; green boxes, supportive care.

Figure 4

Hypothetical patient journey showing variation in components of kidney care with disease/time progression. In this example, a major health event necessitates changes to all components of kidney care, culminating in a discrete shift to a purely supportive approach with the withdrawal of dialysis. Light-blue boxes, preventive care; yellow boxes, kidney care; green boxes, supportive care. CKD, chronic kidney disease.

Figure 5

Hypothetical patient stories. (a) Patient A starts dialysis for HIV-associated nephropathy and dies while in receipt of kidney replacement therapy. (b) Patient B follows the same initial trajectory, but when the dialysis provider abruptly goes out of business or withdraws from the market, the patient has no option but to transition to choice-restricted conservative care. Patient B dies prematurely and experiences an abrupt onset of palliative care needs at the point of dialysis discontinuation. Light-blue boxes, preventive care; yellow boxes, kidney care; green boxes, supportive care. CKD, chronic kidney disease; ESKD, end-stage kidney disease.