816 that withdrawal of dialysis occur in the hospital setting, and in most circumstances this request should be respected The goal of medical care is not limited to treatment and cure; medical teams a[.]
A Wightman et al 816 that withdrawal of dialysis occur in the hospital setting, and in most circumstances this request should be respected The goal of medical care is not limited to treatment and cure; medical teams also carry an obligation to ease a patient’s pain and suffering associated with dying In some circumstances, those obligations may best be met in the hospital setting Parents and providers should be prepared for the fact that death may not occur rapidly after forgoing dialysis In an adult series, death after dialysis discontinuation occurred at a median of 8 days after stopping, but some patients lived over 3 years after reaching stage V CKD despite never starting dialysis [50] Disagreement Parents should be supported throughout the decision-making process, provided with the most accurate evidence on which to base their decisions, and not made to feel that they are alone in carrying the weight of this difficult choice [51] In most situations, parents can be trusted to make a decision that is consistent with the medical information and well within the standard of care In some situations, however, there may be fundamental differences of opinion within the family, within the medical team, or between the family and medical team as to the best course of action Instead of pursuing unilateral decisions, it is the duty of the medical team to continue to engage in respectful dialogue [52] These discussions should include revisiting the family’s goals of care for the child and education about the child’s expected prognosis and treatment options Discussions should also acknowledge the degree of uncertainty related to prognosis [27] Palliative medicine, pastoral care, and cultural support can be extremely helpful in this communication and should be engaged early in this process [27, 45, 49, 53] The RPA guideline recommends that medical teams explicitly describe comfort measures and other components of palliative care that are available [27] The purpose of these discussions is to develop consensus (not unanimity) among the medical team and the family The RPA guideline also recommends the establishment of a systematic due process approach for conflict resolution if there is disagreement between parents and the medical team or within the medical team itself about what decision should be made [27] Potential interventions could include consultation with colleagues not involved in the child’s direct medical care or convening of multidisciplinary conferences to discuss different perspectives related to treatment If consensus still cannot be reached or if the treating nephrologist believes that the parents are making decisions inconsistent with the best interests of the child, consultation with a hospital ethics committee is highly recommended [27] Court involvement to order dialysis treatment over parental objections represents a serious challenge to parental authority and autonomy and may permanently alter a family’s future interactions with medical providers Further, a personal or cultural history of negative interactions with child protective services (e.g., the indigenous populations of Canada, Australia, and the United States) is the reality for many families and may further weaken trust in providers who involve protective services without exhausting attempts at reaching consensus Pursuit of state intervention should be considered only as a last resort Futility As part of discussions in the setting of disagreement regarding forgoing dialysis, nephrologists may be tempted to claim that dialysis treatment is futile This is rarely, if ever, a sufficient basis to forgo dialysis A claim of futility is supported by the standard that a doctor is under no moral obligation to to a patient that which is of no benefit to the patient Unfortunately, there is no single agreed-upon definition of futility, and the concept has different meanings to physicians, parents, and the press [26, 54] Physiologic futility claims that an intervention cannot achieve the desired outcome [54] An example of this would be dialysis in a child for whom it is impossible to obtain vascular or peritoneal access Quantitative futility claims that while it is possible for an 42 Ethical Decision-Making in Pediatric Dialysis intervention to achieve the desired goal, it is so unlikely that it should not be pursued [55] An example may be providing dialysis to an exceptionally small newborn (i.e., one weighing less than