Developing the ethical framework of end-stage kidney disease care: from practice to policy

      Ethical issues relating to end-stage kidney disease (ESKD) care are increasingly being discussed by clinicians and ethicists but are still infrequently considered at a policy level or in the education and training of health care professionals. In most lower-income countries, access to kidney replacement therapies such as dialysis is not universal, leading to overt or implicit rationing of resources and potential exclusion from care of those who are unable to sustain out-of-pocket payments. These circumstances create significant inequities in access to ESKD care within and between countries and impose emotional and moral burdens on patients, families, and health care workers involved in decision-making and provision of care. End-of-life decision-making in the context of ESKD care in all countries may also create ethical dilemmas for policy makers, professionals, patients, and their families. This review outlines several ethical implications of the complex challenges that arise in the management of ESKD care around the world. We argue that more work is required to develop the ethics of ESKD care, so as to provide ethical guidance in decision-making and education and training for professionals that will support ethical practice in delivery of ESKD care. We briefly review steps that may be required to accomplish this goal, discussing potential barriers and strategies for success.


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        • Jha V.
        • Martin D.E.
        • Bargman J.M.
        • et al.
        Ethical issues in dialysis therapy.
        Lancet. 2017; 389: 1851-1856
        • Luyckx V.A.
        • Miljeteig I.
        • Ejigu A.M.
        • et al.
        Ethical challenges in the provision of dialysis in resource-constrained environments.
        Semin Nephrol. 2017; 37: 273-286
        • Stanifer J.W.
        • Von Isenburg M.
        • Chertow G.M.
        • et al.
        Chronic kidney disease care models in low- and middle-income countries: a systematic review.
        BMJ Glob Health. 2018; 3e000728
        • Ashuntantang G.
        • Osafo C.
        • Olowu W.A.
        • et al.
        Outcomes in adults and children with end-stage kidney disease requiring dialysis in sub-Saharan Africa: a systematic review.
        Lancet Glob Health. 2017; 5: e408-e417
        • Obrador G.T.
        • Rubilar X.
        • Agazzi E.
        • et al.
        The challenge of providing renal replacement therapy in developing countries: the Latin American perspective.
        Am J Kidney Dis. 2016; 67: 499-506
        • Harris D.C.H.
        • Davies S.J.
        • Finkelstein F.O.
        • et al.
        Increasing access to integrated ESKD care as part of universal health coverage.
        Kidney Int. 2019; 95: S1-S33
        • Butler C.R.
        • Mehrotra R.
        • Tonelli M.R.
        • et al.
        The evolving ethics of dialysis in the United States: a principlist bioethics approach.
        Clinl J Am Soc Nephrol. 2016; 11: 704-709
        • Rettig R.A.
        The policy debate on patient care financing for victims of end-stage renal disease.
        Law Contemp Probl. 1976; 40: 196-230
        • Kahrass H.
        • Strech D.
        • Mertz M.
        The full spectrum of clinical ethical issues in kidney failure: findings of a systematic qualitative review.
        PLoS One. 2016; 11e0149357
        • Liyanage T.
        • Ninomiya T.
        • Jha V.
        • et al.
        Worldwide access to treatment for end-stage kidney disease: a systematic review.
        Lancet. 2015; 385: 1975-1982
        • Anand S.
        • Bitton A.
        • Gaziano T.
        The gap between estimated incidence of end-stage renal disease and use of therapy.
        PLoS One. 2013; 8e72860
        • Moosa M.R.
        • Kidd M.
        The dangers of rationing dialysis treatment: the dilemma facing a developing country.
        Kidney Int. 2006; 70: 1107-1114
        • Moosa M.R.
        • Maree J.D.
        • Chirehwa M.T.
        • et al.
        Use of the 'accountability for reasonableness' approach to improve fairness in accessing dialysis in a middle-income country.
        PLoS One. 2016; 11e0164201
        • Etheredge H.
        • Fabian J.
        Challenges in expanding access to dialysis in South Africa—expensive modalities, cost constraints and human rights.
        Healthcare (Basel). 2017; 5: 38
        • Cervantes L.
        • Tuot D.
        • Raghavan R.
        • et al.
        Association of emergency-only vs standard hemodialysis with mortality and health care use among undocumented immigrants with end-stage renal disease.
        JAMA Intern Med. 2018; 178: 188-195
        • Van Biesen W.
        • Vanholder R.
        • Ernandez T.
        • et al.
        Caring for migrants and refugees with end-stage kidney disease in Europe.
        Am J Kidney Dis. 2018; 71: 701-709
        • Elamin S.
        • Obeid W.
        • Abu-Aisha H.
        Renal replacement therapy in Sudan, 2009.
        Arab J Nephrol Transplant. 2010; 3: 31-36
        • Savla D.
        • Chertow G.M.
        • Meyer T.
        • et al.
        Can twice weekly hemodialysis expand patient access under resource constraints?.
        Hemodial Int. 2017; 21: 445-452
        • Marckmann G.
        • Schmidt H.
        • Sofaer N.
        • et al.
        Putting public health ethics into practice: a systematic framework.
        Front Public Health. 2015; 3: 23
        • Persad G.
        • Wertheimer A.
        • Emanuel E.J.
        Principles for allocation of scarce medical interventions.
        Lancet. 2009; 373: 423-431
        • Afiatin
        • Khoe L.C.
        • Kristin E.
        • et al.
        Economic evaluation of policy options for dialysis in end-stage renal disease patients under the universal health coverage in Indonesia.
        PLoS One. 2017; 12e0177436
        • World Health Organization
        Making fair choices on the path to universal health coverage: Final report of the WHO Consultative Group on Equity and Universal Health Coverage.
        (Available at:)
        • Tantivess S.
        • Werayingyong P.
        • Chuengsaman P.
        • et al.
        Universal coverage of renal dialysis in Thailand: promise, progress, and prospects.
        BMJ. 2013; 346: f462
        • Kher V.
        End-stage renal disease in developing countries.
        Kidney Int. 2002; 62: 350-362
        • Prakongsai P.
        • Palmer N.
        • Uay-Trakul P.
        • et al.
        The implications of benefit package design: the impact on poor Thai households of excluding renal replacement therapy.
        J Int Dev. 2009; 21: 291-308
        • Bradshaw C.
        • Gracious N.
        • Narayan R.
        • et al.
        Paying for hemodialysis in Kerala, India: a description of household financial hardship in the context of medical subsidy.
        Kidney Int Rep. 2019; 4: 390-398
        • Kaur G.
        • Prinja S.
        • Ramachandran R.
        • et al.
        Cost of hemodialysis in a public sector tertiary hospital of India.
        Clin Kidney J. 2018; 11: 726-733
        • Essue B.M.
        • Laba M.
        • Knaul F.
        • et al.
        Economic burden of chronic ill health and injuries for households in low- and middle-income countries.
        in: Jamison D.T. Gelband H. Horton S. Disease Control Priorities: Improving Health and Reducing Poverty. The International Bank for Reconstruction and Development/The World Bank, Washington, DC2017
        • Parameswaran S.
        • Geda S.B.
        • Rathi M.
        • et al.
        Referral pattern of patients with end-stage renal disease at a public sector hospital and its impact on outcome.
        Natl Med J India. 2011; 24: 208-213
        • Downing J.
        • Boucher S.
        • Daniels A.
        • et al.
        Paediatric palliative care in resource-poor countries.
        Children (Basel). 2018; 5: 27
        • O'Hare A.M.
        • Szarka J.
        • McFarland L.V.
        • et al.
        Provider perspectives on advance care planning for patients with kidney disease: whose job is it anyway?.
        Clin J Am Soc Nephrol. 2016; 11: 855-866
        • Beauchamp T.L.
        • Childress J.F.
        Principles of Biomedical Ethics, 7 ed.
        Oxford University Press, New York, NY2013
        • Thomas N.
        • Jenkins K.
        • McManus B.
        • et al.
        The experience of older people in the shared decision-making process in advanced kidney care.
        Biomed Res Int. 2016; 2016: 7859725
        • Vreeman R.
        • Kamaara E.
        • Kamanda A.
        • et al.
        A qualitative study using traditional community assemblies to investigate community perspectives on informed consent and research participation in western Kenya.
        BMC Med Ethics. 2012; 13: 23
        • Defaye F.B.
        • Desalegn D.
        • Danis M.
        • et al.
        A survey of Ethiopian physicians' experiences of bedside rationing: extensive resource scarcity, tough decisions and adverse consequences.
        BMC Health Serv Res. 2015; 15: 467

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