Introduction: Of the nearly 430,000 children in foster care in the US, an estimated 10% are considered medically fragile or complex. These children may require multiple medications, numerous medical appointments, be technology dependent, and require recurrent hospitalizations. These intensive care needs often result in frequent and difficult medical decisions. For the most medically complex children in foster care, high stake medical decisions such as whether to proceed with a tracheostomy or sign a DNR order can be challenging and fraught with ethical, legal, and practical challenges. Case Report: “Courtney” is a 5-year-old female with a neurodegenerative disorder, seizures, and severe cognitive impairment. She requires multiple medications, supplemental oxygen with overnight CPAP, continuous tube feeds and frequent respiratory treatments. She is minimally responsive to external stimuli. Courtney’s biological parents were addicted to drugs and had no social supports. After her birth, they visited her occasionally in the NICU, but over time the visits stopped. By discharge, it was determined that they were unable to provide her necessary medical care and she was placed in medical foster care. She has been living with her foster parents since she was 6-months-old. Her biological parents had their parental rights terminated 3 years ago. Courtney was recently admitted to the hospital due to respiratory failure and now requires ventilator support. The PICU and pulmonary team believe that Courtney’s worsening respiratory status may be her new baseline and a tracheostomy would be the next step. In light of her recent decompensation, the medical team also recommends clarifying her code status. The team discusses these issues with Courtney’s foster care mother, who is always at the bedside. She informs the team that she is not allowed to make medical decisions and they must contact the Department of Social Services (DSS). The team learns from DSS that while they are her legal medical decision-maker, they do not have the authority to make decisions about DNR orders; such decisions must be presented to a judge. Discussion/Conclusion: When a medical decision must be made, parents are typically given authority to decide what is in the best interest of their individual child. But what happens for children in foster care who have been removed from their parent’s custody? Once parental rights have been terminated, typically the agency and/or court system is given legal authority to make medical decisions. Yet how can agency workers or judges, who are far removed from the child, fully appreciate the individual child's quality of life and goals of care to make such complex decisions? When considering medical decision making for medically complex children in foster care, who really knows the best interest of the child? In this case presentation, such ethical questions will be explored.
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Council on Foster Care, Adoption, and Kinship Care Program| May 01 2018
Decision-Making for Medically Complex Children in Foster Care: Exploring the Ethical Challenges
Rebecca R. Seltzer, MD;
Pediatrics (2018) 142 (1_MeetingAbstract): 762.
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Rebecca R. Seltzer, Renee Boss; Decision-Making for Medically Complex Children in Foster Care: Exploring the Ethical Challenges. Pediatrics May 2018; 142 (1_MeetingAbstract): 762. 10.1542/peds.142.1MA8.762
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