Abstract
Children with kidney failure require kidney replacement therapy (KRT), namely maintenance dialysis and kidney transplant. Adequate kidney failure care consists of KRT or conservative treatment with palliative care. In the context of kidney failure, children depend on parents who are their surrogate decision-makers, and the pediatric nephrology team for taking decisions about KRT or conservative care. In this paper, we discuss the ethical challenges that arise relating to such decision-making, from a global perspective, using the framework of pediatric bioethics. While many ethical dilemmas in the care of children with KRT are universal, the most significant ethical dilemma is the inequitable access to KRT in low & middle income countries (LMICs) where rates of morbidity and mortality depend on the family's ability to pay. Children with kidney failure in LMICs have inadequate access to maintenance dialysis, timely kidney transplant and palliative care compared to their counterparts in high income countries. Using case vignettes, we highlight how these disparities place severe burdens on caregivers, resulting in difficult decision-making, and lead to moral distress among pediatric nephrologists. We conclude with key action points to change this status-quo, the most important being advocacy by the global pediatric nephrology community for better access to affordable kidney failure care for children.
Highlights
INTRODUCTION“Less than 10% of children with kidney failure worldwide receive dialysis or a transplant” [1]
Kidney failure care consists of conservative treatment or kidney replacement therapy (KRT), i.e., maintenance dialysis or kidney transplant
The purpose of this paper is to describe the ethical challenges and disparities related to providing adequate kidney failure care for children from a global perspective, representing patients, caregivers and the healthcare team concerns
Summary
“Less than 10% of children with kidney failure worldwide receive dialysis or a transplant” [1]. The principle of beneficence requires seeking to provide care that would be expected to do the most good for the patient Both parents and pediatric nephrologists have responsibility for the well-being of a child with kidney failure and are generally expected to make decisions in a child’s best interest. In the case of KRT non-maleficence may require clinicians to avoid treatment choices or to seek state intervention to prevent parental decisions that would be expected to result in preventable harm to the child. In the case of kidney failure care justice may require decision-makers considering treatment choices for two children with kidney failure be treated unless there are morally meaningful differences between them Factors such as family resources and wealth are not generally considered as morally meaningful differences. In LIMCs these ethical challenges both inform and are compounded by the disparities experienced by children with kidney failure, their families, and their clinicians
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