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AAP issues new guidance on end-of-life decision-making for children

The AAP has issued new recommendations based on ethical considerations and available scientific evidence to help clinicians and other interested, relevant parties make decisions on forgoing life-sustaining medical treatment in pediatric patients.

“[A]s medical and surgical technologies advance, pediatricians, parents and other family caregivers may need to consider when it is ethically supportable or advisable to use available interventions to sustain the life of a child who is severely ill,” Kathryn L. Weise, MD, MA, FAAP, of the department of bioethics at Pediatric Institute, Cleveland Clinic Children’s, and colleagues wrote.

AAP’s new recommendations on forgoing life-sustaining medical treatment (LSMT) are:

--There is an assumption in favor of sustaining life in most situations, but forgoing LSMT is ethically supportable when the burdens of treatment outrank the benefits to the child.

--Comprehending specific applicability of institutional, regional, state and national regulations associated with forgoing LSMT, including the Child Abuse Prevention and Treatment Act, is significant to practice ethically within existing legal frameworks.

--Thorough, truthful and respectful discussions among members of the family decision-makers, the patient, the medical home and treatment team “supports the process of shared decision-making across care environments and throughout the evolving course of the child’s illness.”

--Sensed disagreement among professionals may be stressful to families. At the same time, professional opinions behind treatment recommendations are critical to informing family decision-makers, even when these views differ.

--Each child is entitled to “open and honest” communication of “age-appropriate information about his or her illness, as well as potential treatments and outcomes, within the context of family decisions” and to be “given the opportunity to participate in decisions affecting his or her care, according to age, understanding, capacity, and parental support.” The child's involvement can be increased by using care-planning tools.

--Ethics consultation may be useful to the families and the health care team when there is apprehension about forgoing LSMT or clarification is needed.

--Ethical approaches to handling disagreement between the views and wishes of family decision-makers and/or between family caregivers and the health care team can be discussed by utilizing the fundamentals of negotiation and conflict resolution and discussed with backing from consultants in palliative care or ethics and spiritual care providers.

--Sensible accommodation for the timing of forgoing LSMT may be given to families to allow family members to come together, but the greatest priority is to eliminate prolonged suffering of the patient.

--It may be ethically allowable to cease LSMT without family agreement in rare circumstances of extreme burden of treatment when LSMT is simply prolonging inevitable death.

--Medically administered hydration and nutrition, like other LSMTs, are considered interventions that may be withdrawn or withheld when there is agreement that they do not provide net benefit to the child and thereby fail to back the child’s best interests.

--The AAP promotes the idea of “required reconsideration” of do not attempt resuscitation orders in the course of knowledgeable consent for anesthesia or surgery. It may be ethically appropriate to resume such orders intraoperatively and perioperatively if this is accordant with goals of care.

--Physicians unwilling to participate in limitation or withdrawal of LSMT on the basis of their own personal, religious or moral beliefs should still care for the child until they are able to find another physician to care for the patient.

--The principles on decision-making are the same for the care of children with developmental disabilities, those who are in foster care, and children whose injuries are presumed to be the result of child abuse, as other children not in these specific circumstances.

--For newborn infants born at less than 25 weeks, who have multiple organ system failure or certain life-threatening congenital anomalies or who have survived profound asphyxia, the AAP recognizes that “prognosis is uncertain but likely to be very poor, ” and survival may mean a high risk for “permanent, severe neurodevelopmental and other special health care needs” and diminished quality of life, it is ethically supportable for decisions about forgoing LSMT, created in a context of shared decision-making with professionals involved, to be decided by parental preferences, except when requested treatments are judged to be of net harm, “of no benefit, or physiologically futile and merely prolonging dying.”

--Physicians should use processes presently in place for the determination of death by neurologic criteria and be knowledgeable of pertinent state statutes and institutional policies.

Researchers encouraged those clinicians “feeling uncomfortable” on this issue to either take training courses or to find a mentor who is well-versed on the issue of LSMT.

AAP last updated its guidelines on life-sustaining medical treatment in 1994. – by Janel Miller

Disclosures: The authors report no relevant financial disclosures.