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应对儿童肾衰竭护理中的伦理挑战:全球立场

Addressing the Ethical Challenges of Providing Kidney Failure Care for Children: A Global Stance.

作者信息

Pais Priya, Wightman Aaron

机构信息

Department of Pediatric Nephrology, St. John's Medical College, St. John's National Academy of Health Sciences, Bangalore, India.

Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, United States.

出版信息

Front Pediatr. 2022 Mar 11;10:842783. doi: 10.3389/fped.2022.842783. eCollection 2022.

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.

摘要

肾衰竭患儿需要肾脏替代治疗(KRT),即维持性透析和肾移植。充分的肾衰竭护理包括KRT或采用姑息治疗的保守治疗。在肾衰竭的情况下,儿童依赖作为其替代决策者的父母以及儿科肾脏病团队来决定KRT或保守治疗。在本文中,我们使用儿科生物伦理学框架,从全球视角探讨与这种决策相关的伦理挑战。虽然在KRT患儿护理中存在的许多伦理困境是普遍的,但最重大的伦理困境是低收入和中等收入国家(LMICs)在KRT方面的不公平获取,在这些国家,发病率和死亡率取决于家庭的支付能力。与高收入国家的患儿相比,LMICs的肾衰竭患儿在获取维持性透析、及时肾移植和姑息治疗方面不足。通过案例 vignettes,我们强调了这些差异如何给照顾者带来沉重负担,导致艰难的决策,并在儿科肾脏病医生中引发道德困扰。我们最后提出了改变这种现状的关键行动要点,其中最重要的是全球儿科肾脏病学界倡导为儿童提供更好的可负担得起的肾衰竭护理。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ebc9/8963107/388eae3de7f0/fped-10-842783-g0001.jpg

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