Pediatric health care is practiced with the goal of promoting the best interests of the child. Treatment generally is rendered under a presumption in favor of sustaining life. However, in some circumstances, the balance of benefits and burdens to the child leads to an assessment that forgoing life-sustaining medical treatment (LSMT) is ethically supportable or advisable. Parents are given wide latitude in decision-making concerning end-of-life care for their children in most situations. Collaborative decision-making around LSMT is improved by thorough communication among all stakeholders, including medical staff, the family, and the patient, when possible, throughout the evolving course of the patient's illness. Clear communication of overall goals of care is advised to promote agreed-on plans, including resuscitation status. Perceived disagreement among the team of professionals may be stressful to families. At the same time, understanding the range of professional opinions behind treatment recommendations is critical to informing family decision-making. Input from specialists in palliative care, ethics, pastoral care, and other disciplines enhances support for families and medical staff when decisions to forgo LSMT are being considered. Understanding specific applicability of institutional, regional, state, and national regulations related to forgoing LSMT is important to practice ethically within existing legal frameworks. This guidance represents an update of the 1994 statement from the American Academy of Pediatrics on forgoing LSMT.
Many cancers presenting in children and adolescents are curable with surgery, chemotherapy, and/or radiotherapy. Potential adverse consequences of treatment include sterility, infertility, or subfertility as a result of gonad removal, damage to germ cells as a result of adjuvant therapy, or damage to the pituitary and hypothalamus or uterus as a result of irradiation. In recent years, treatment of solid tumors and hematologic malignancies has been modified in an attempt to reduce damage to the gonadal axis. Simultaneously, advances in assisted reproductive technology have led to new possibilities for the prevention and treatment of infertility. This clinical report reviews the medical aspects and ethical considerations that arise when considering fertility preservation in pediatric and adolescent patients with cancer.
Informed consent should be seen as an essential part of health care practice; parental permission and childhood assent is an active process that engages patients, both adults and children, in health care. Pediatric practice is unique in that developmental maturation allows, over time, for increasing inclusion of the child's and adolescent's opinion in medical decision-making in clinical practice and research.
Although respect for parents’ decision-making authority is an important principle, pediatricians should report suspected cases of medical neglect, and the state should, at times, intervene to require medical treatment of children. Some parents’ reasons for refusing medical treatment are based on their religious or spiritual beliefs. In cases in which treatment is likely to prevent death or serious disability or relieve severe pain, children’s health and future autonomy should be protected. Because religious exemptions to child abuse and neglect laws do not equally protect all children and may harm some children by causing confusion about the duty to provide medical treatment, these exemptions should be repealed. Furthermore, public health care funds should not cover alternative unproven religious or spiritual healing practices. Such payments may inappropriately legitimize these practices as appropriate medical treatment.
The persistent mismatch between the supply of and need for transplantable organs has led to efforts to increase the supply, including controlled donation after circulatory death (DCD). Controlled DCD involves organ recovery after the planned withdrawal of life-sustaining treatment and the declaration of death according to the cardiorespiratory criteria. Two central ethical issues in DCD are when organ recovery can begin and how to manage conflicts of interests. The “dead donor rule” should be maintained, and donors in cases of DCD should only be declared dead after the permanent cessation of circulatory function. Permanence is generally established by a 2- to 5-minute waiting period. Given ongoing controversy over whether the cessation must also be irreversible, physicians should not be required to participate in DCD. Because the preparation for organ recovery in DCD begins before the declaration of death, there are potential conflicts between the donor’s and recipient’s interests. These conflicts can be managed in a variety of ways, including informed consent and separating the various participants’ roles. For example, informed consent should be sought for premortem interventions to improve organ viability, and organ procurement organization personnel and members of the transplant team should not be involved in the discontinuation of life-sustaining treatment or the declaration of death. It is also important to emphasize that potential donors in cases of DCD should receive integrated interdisciplinary palliative care, including sedation and analgesia.
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