Abstract
Death from stage 5 chronic kidney disease (CKD 5) in childhood or adolescence is rare, but something that all paediatric renal physicians and most paediatricians will encounter. In this paper, we present the literature on three key areas of palliative care practice essential to good clinical management: shared decision-making, advance care planning, and symptom management, with particular reference to CKD 5 where kidney transplant is not an option and where a decision has been made to withdraw or withhold dialysis. Some areas of care, particularly with regard to symptom management, have not been well-studied in children and young people (CYP) with CKD 5 and recommendations with regard to drug choice and dose modification are based on adult literature, known pharmacokinetics, and clinical experience.
Highlights
The Renal Physicians Association identifies two groups of children and young people (CYP) who may be considered unsuitable for dialysis and transplant: 1. Those who, often due to complex multi-system disease or co-morbidity, would not be suitable candidates for transplant and where dialysis is considered a significant burden without medium- to long-term benefit
Those who have embarked on dialysis, but for whom transplant is no longer an option, where the burden of dialysis has become too great in relation to potential benefit [1]
Consider forgoing dialysis in a patient with a terminal illness whose long-term prognosis is poor if the patient and family agree with the physician that dialysis would not be of benefit or the burdens would outweigh the benefit
Summary
Palliative care for children and young people with stage 5 chronic kidney disease. Henderson2 & Bhumik Patel3 & Fliss E. Received: 12 January 2021 / Revised: 3 March 2021 / Accepted: 15 March 2021 # The Authors 2021, corrected publication 2021
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