Guidance on Forgoing Life-Sustaining Medical Treatment

Abstract

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.

Compassionate deactivation of ventricular assist devices in children: A survey of pediatric ventricular assist device clinicians’ perspectives and practices

“…Individuals or their surrogates have the legal and ethical right to withdraw consent for ongoing therapy at any time, including life‐sustaining therapy. The situation in pediatrics is complicated by near‐universal involvement of surrogate decision‐makers and variable cognitive and developmental status of the patients . This is reflected in the diversity of survey responses regarding scenarios of shared decision‐making, and when to honor a child's or parent's request to discontinue VAD support.…”

Management options and parental voice in the treatment of trisomy 13 and 18

“…This struggle to find a balance between parental rights and the desire to prevent the use of painful and non-beneficial interventions is addressed by the recent AAP Guidance on Forgoing Life-Sustaining Medical Treatment (LSMT). It states that "It may be ethically supportable to forgo LSMT without family agreement in rare circumstances of extreme burden of treatment with no benefit to the patient beyond postponement of death" [29]. The tension between parents and providers in these extreme cases has resulted in significant moral distress and highlights the need for a mechanism that allows medical providers to stop LSMT when the family refuses.…”

Futility in the paediatric cardiac ICU

“…1 The American Academy of Pediatrics refers to therapies that are "physiologically futile" as interventions with no chance of achieving the intended physiologic benefit. Several organisations have agreed with this definition, re-enforcing that "clinicians should not provide futile or proscribed interventions" [2][3][4] and studies have used this definition to investigate issues around futility. 5 The prevalence of futile or inappropriate care in the paediatric ICU is estimated to be 5-20%.…”