The Ethics of Withholding and Withdrawing Therapy in Infants and Young Children

Towards guidelines for dialysis in children with end-stage renal disease

“…When a decision to withhold or withdraw RRT is being considered, the patient and family must be supported professionally. In addition to this support, an Ethics Committee consultation may be sought, and, as a last resort, court involvement may be necessary to decide what is in the best interests of the child or who will make the determination [6,20]. Of course, in the event of a decision to withhold or withdraw RRT the health care team should continue a compassionate presence to ensure the physical, psychological, and spiritual well-being of the child and family during the terminal phase of care [31].…”

“…Over 30 years later many ethical concerns about dialysis still need analysis, including criteria for initiation and withdrawal of treatment, refusal of RRT, and the quality of patient care [6]. Some guidelines exist for the refusal of adult patients to dialysis programs [2,3].…”

“…Two ethical justifications commonly given for withholding or withdrawing dialysis are the patient's right to refuse dialysis, which is based on the right of self determination, and an unfavorable balance of benefits to burdens to the patient. Both nephrologists and ethicists recommend that decisions to start or stop dialysis be made on a case-by-case basis, because individual patients evaluate differently the benefits and burdens [5,6]. It has been suggested that parents have the right, ethically and legally, to elect for conservative treatment of their children with ESRD [26].…”

The ethics of withholding and withdrawing dialysis therapy in infants

“…Although one may attempt to apply the four principles of medical ethics, i.e., autonomy, beneficence, non-maleficence, and justice [2], to the particular clinical problem, the situation is complicated by the traditional precedent that parents are entitled to make decisions on behalf of their children, as they are often regarded as the best-possible surrogate decision makers [3]. The ethical decision-making process is obviously made more difficult by family disagreement and media intrusion [4]. We describe a case study that illustrates some of the clinical, theoretical, legal, and economic considerations involved in the ethical decision process and offer some tentative guidelines for approaching such dilemmas.…”