Guidance on Forgoing Life-Sustaining Medical Treatment

Author:

Weise Kathryn L.1,Okun Alexander L.2,Carter Brian S.3,Christian Cindy W.4,Katz Aviva L.,Laventhal Naomi Tricot,Macauley Robert Conover,Moon Margaret Rusha,Opel Douglas J.,Statter Mindy B.,Feudtner Chris,Boss Renee Denise,Hauer Julie Marie,Humphrey Lisa Michelle,Klick Jeffrey,Linebarger Jennifer S.,Flaherty Emalee G.,Gavril Amy R.,Idzerda Sheila M.,Laskey Antoinette,Legano Lori A.,Leventhal John M., , ,

Affiliation:

1. Department of Bioethics, Cleveland Clinic, and Pediatric Institute, Cleveland Clinic Children's, Cleveland, Ohio;

2. New Alternatives for Children, New York, New York;

3. Division of Neonatology and Children’s Mercy Bioethics Center, Department of Pediatrics, School of Medicine, University of Missouri-Kansas City, Kansas City, Missouri; and

4. Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania and Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania

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.

Publisher

American Academy of Pediatrics (AAP)

Subject

Pediatrics, Perinatology, and Child Health

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