Zurich Open Repository and Archive University of Zurich Main Library Strickhofstrasse 39 CH-8057 Zurich www.zora.uzh.ch Year: 2019 Ethical Challenges Relating to Provision of Sustainable Renal Care in Resource Limited Settings – Focus on Sub-Saharan Africa Luyckx, Valerie Ann Abstract: Kidney disease is increasingly being recognized as a public health problem, not only because large numbers of patients are affected, but also because of the diagnostic and therapeutic challenges asso- ciated with its management, especially in low resource settings, where conflicts between financing, equity and social values frequently arise. When kidneys fail, either acutely or chronically, dialysis represents an immediate life-saving therapy. Dialysis is technically available in most countries, but is time, labor and resource intensive, which limits access largely to those who can afford to pay when not covered through universal health coverage or health insurance. Access to dialysis is therefore highly inequitable across country income groups globally and within countries. Dialysis poses ethical challenges at many levels in low-resource settings. Policy makers must consider whether to provide dialysis at all or leave it to market forces. If dialysis is to be provided, who, where and how to dialyze safely and equitably are necessary questions to consider. When these questions are not addressed transparently at a policy level, clinicians and families must face complex decisions about whether to start dialysis or not at the bedside. Policy- making requires evidence. Based on broad inequities in access to dialysis and the potential consequences for individuals and families, health care workers, the health system and society, this PhD begins with an epidemiologic description of outcomes in patients requiring dialysis in sub-Saharan Africa and consequent moral distress experienced by nephrologists at the bedside, investigates overarching strategies to reduce the global burden of kidney disease, and focuses on the ethical implications of priority setting and policy making regarding provision of dialysis in sub-Saharan Africa. Posted at the Zurich Open Repository and Archive, University of Zurich ZORA URL: https://doi.org/10.5167/uzh-176777 Dissertation Accepted Version Originally published at: Luyckx, Valerie Ann. Ethical Challenges Relating to Provision of Sustainable Renal Care in Resource Limited Settings – Focus on Sub-Saharan Africa. 2019, University of Zurich, Faculty of Medicine. Institute of Biomedical Ethics and History of Medicine, University of Zurich Director: Prof. Dr. med. Dr. phil. Nikola Biller-Andorno Dissertation under the supervision of Prof. Dr. med. Dr. phil. Nikola Biller-Andorno ETHICAL CHALLENGES RELATING TO PROVISION OF SUSTAINABLE RENAL CARE IN RESOURCE LIMITED SETTINGS - FOCUS ON SUB-SAHARAN AFRICA INAUGURAL-DISSERTATION To receive the title of (Dr. sc. med./PhD) awarded by the Faculty of Medicine University of Zurich submitted by Valerie Ann Luyckx Dissertation committee: Prof. Dr. med. Dr. phil. Nikola Biller-Andorno (main supervisor) Prof. Dr. John D.H. Porter Prof. Dr. Ingrid Miljeteig This dissertation has been accepted by the Medical Faculty, University of Zurich upon reQuest of Prof. Dr. Dr. Nikola Biller-Andorno Zurich, 2019 PUBLICATION RECORD The work presented in the dissertation chapters has been published as follows 1. Olowu, W.A., A. Niang, C. Osafo, G. Ashuntantang, F.A. Arogundade, J. Porter, S. Naicker, and V.A. Luyckx*. Outcomes of acute kidney injury in children and adults in sub-Saharan Africa: a systematic review. Lancet Glob Health, 2016. 4(4): p. e242-50. *Corresponding and senior author. 2. Ashuntantang, G., C. Osafo, W.A. Olowu, F. Arogundade, A. Niang, J. Porter, S. Naicker, and V.A. Luyckx*. Outcomes in adults and children with end-stage kidney disease requiring dialysis in sub-Saharan Africa: a systematic review. Lancet Glob Health, 2017. 5(4): p. e408-e417.*Corresponding and senior author. 3. Luyckx, V.A., K.R. Tuttle, G. Garcia-Garcia, M.B. Gharbi, H.J.L. Heerspink, D.W. Johnson, Z.H. Liu, Z.A. Massy, O. Moe, R.G. Nelson, L. Sola, D.C. Wheeler, and S.L. White. Reducing major risk factors for chronic kidney disease. Kidney Int Suppl (2011), 2017. 7(2): p. 71- 87. 4. Luyckx, V.A., M. Tonelli, and J.W. Stanifer. The global burden of kidney disease and the sustainable development goals. Bull World Health Organ, 2018. 96(6): p. 414-422D. 5. Luyckx, V.A., I. Miljeteig, A.M. Ejigu, and M.R. Moosa. Ethical Challenges in the Provision of Dialysis in Resource-Constrained Environments. Semin Nephrol, 2017. 37(3): p. 273- 286. 6. Gopichandran, V.*, V.A. Luyckx*, N. Biller-Andorno, A. Fairchild, J. Singh, N. Tran, A. Saxena, P. Launois, A. Reis, D. Maher, and M. Vahedi. Developing the ethics of implementation research in health. Implement Sci, 2016. 11(1): p. 161. *Joint first authorship. Presentation at international conference (manuscript not yet submitted): 1 Luyckx V.A., G. Ashuntantang, I. Miljeteig. Moral dilemmas encountered by physicians treating patients with kidney disease in sub-Saharan Africa highlight the need for transparent priority setting. Oral presentation: Priorities 2018 Conference, Linköping, Sweden, 2018 2 ABSTRACT Kidney disease is increasingly being recognized as a public health problem, not only because large numbers of patients are affected, but also because of the diagnostic and therapeutic challenges associated with its management, especially in low resource settings, where conflicts between financing, equity and social values freQuently arise. When kidneys fail, either acutely or chronically, dialysis represents an immediate life-saving therapy. Dialysis is technically available in most countries, but is time, labor and resource intensive, which limits access largely to those who can afford to pay when not covered through universal health coverage or health insurance. Access to dialysis is therefore highly inequitable across country income groups globally and within countries. Dialysis poses ethical challenges at many levels in low-resource settings. Policy makers must consider whether to provide dialysis at all or leave it to market forces. If dialysis is to be provided, who, where and how to dialyze safely and eQuitably are necessary Questions to consider. When these Questions are not addressed transparently at a policy level, clinicians and families must face complex decisions about whether to start dialysis or not at the bedside. Policy-making reQuires evidence. Based on broad inequities in access to dialysis and the potential conseQuences for individuals and families, health care workers, the health system and society, this PhD begins with an epidemiologic description of outcomes in patients requiring dialysis in sub-Saharan Africa and conseQuent moral distress experienced by nephrologists at the bedside, investigates overarching strategies to reduce the global burden of kidney disease, and focuses on the ethical implications of priority setting and policy making regarding provision of dialysis in sub-Saharan Africa. In Chapter 1, the results of two systematic reviews on access to dialysis and outcomes in patients with both acute and end-stage kidney failure in sub-Saharan Africa are presented. Both studies confirm poor access to care and high mortality even when access to care is possible, largely because of reliance on out-of-pocket payments in the region. In Chapter 2, results of a survey of nephrologists regarding management of patients who reQuire dialysis in sub-Saharan Africa show a high level of moral distress, largely driven by unaffordability of necessary diagnostics and therapeutics. Given that kidney disease would be preventable through improvements in living standards and some basic public health measures, and treatable with early diagnosis and access to appropriate medicines, broad strategies to achieve these at a 3 public health and a policy level are discussed in Chapter 3. The importance of policy development governing provision of, and access to, dialysis is discussed in Chapter 4, together with an ethical analysis of potential policy approaches. Policy development should be inclusive, transparent and responsive. Ethical guidance regarding potential steps to strengthen and support the policy-making process are suggested. The ultimate goal of the work presented here is to generate data to inform policy-making and to empower clinicians, patients and families to raise and articulate ethical concerns regarding care for kidney disease. The need for transparent and fair priority setting in low resource settings must be clearly communicated. Meaningful engagement with all stakeholders in the policy- development process is required to develop a holistic system-wide approach to sustainably and equitably tackle the rising global burden of kidney disease. 4 ACKNOWLEDGEMENTS First and foremost I wish to express my deep gratitude to Prof. Dr. med. Dr. phil. Nikola Biller- Andorno, for her willingness to look beyond my unconventional background as a foreign trained physician struggling to find legitimacy in Switzerland, and for accepting me into the PhD programme. Throughout the PhD I have had the freedom to expand on my ideas and build on my prior experiences, supported unobtrusively but solidly by Prof. Biller-Andorno. Her approach has allowed me to retain my independence and to develop a niche and remain relevant in the international community despite challenging local circumstances. I have not only gained knowledge and furthered my understanding of the topic