Consent, Refusal of Care, and Shared Decision-Making for Pediatric Patients in Emergency Settings (Ethics CME) -
Publication Date: May 2021 (Volume 18, Number 05)
CME Credits: 4 AMA PRA Category 1 Credits™, 4 ACEP Category I Credits, 4 AAP Prescribed Credits, 4 AOA Category 2-A or 2-B Credits. CME expires 05/01/2024.
Specialty CME Credits: Included as part of the 4 credits, this CME activity is eligible for 4 Ethics CME credits, subject to your state and institutional approval.
Sephora N. Morrison, MBBS, MSCI, MBA, CPE, CPXP
Associate Division Chief, Emergency Medicine & Trauma Center; Medical Unit Director, Clinical Operations, Director of Experience & Clinical Integration, Children’s National Hospital, Washington, DC
Laura Sigman, MD, JD, FAAP
Pediatrician, Director of Legal and Policy Coordination for Emergency Medicine, Children’s National Hospital; Clinical Associate Professor of Pediatrics, George Washington University, Washington, DC
Michael J. Gerardi, MD, FAAP, FACEP
Director, Pediatric Emergency Medicine, Goryeb Children’s Hospital and the Atlantic Health System; Faculty, Pediatric Emergency Medicine and Emergency Medicine, Morristown Medical Center, Morristown, New Jersey; Chair Emeritus, Bioethics Committee, Morristown Medical Center; Associate Professor of Emergency Medicine, Icahn School of Medicine at Mount Sinai, New York, NY
Jennifer E. Sanders, MD, FAAP, FACEP
Assistant Professor, Departments of Pediatrics, Emergency Medicine, and Education, Icahn School of Medicine at Mount Sinai, New York, NY
Involving patients or their surrogate decision-makers in their care is an important element of modern medical practice. General consent, informed consent, treatment refusal, and shared decision-making are concepts that are used regularly but can be more complex in pediatric emergency settings. This issue summarizes these concepts and provides case examples that may be encountered. It explains the essential elements of informed consent, the distinction between the informed consent process and the document, how to approach treatment refusal, and approaches to involving patients and their surrogates in shared decision-making. Special circumstances include treatment for sexual and mental health conditions, emancipated minors, mature minors, and situations when custody is unclear. Implementation of these concepts can increase patient satisfaction, resolve conflict, and reduce risk.
A 5-year-old boy is brought in by EMS after sustaining significant abdominal injuries in a motor vehicle crash...
On evaluation, the child is determined to have significant abdominal tenderness. You are concerned because of his expanding abdominal girth, hemoglobin of 5 g/dL, and worsening hypotension.
The trauma team determines emergency blood transfusion is indicated as a life-saving measure as well as an exploratory laparotomy. The boy’s parents are refusing blood transfusion, based on their religious practice.
You are worried this child will die if not given an emergency blood transfusion. Should you ignore the parent’s wishes and transfuse the child? Will there be legal ramifications if you do?
A 16-year-old boy with hemophilia who is otherwise healthy presents to the ED for significant bleeding from an injury sustained while riding his bike…
He does not have any home doses of factor VIII and has been actively bleeding for several hours.
On initial evaluation, he has early signs of hypovolemia and a hemoglobin of 7 g/dL.
After receiving factor VIII, his hemoglobin is still dropping, and is now 5 g/dL, with worsening signs of hypovolemia. The team is concerned the patient is still actively bleeding despite the factor VIII treatment. You determine a blood transfusion is indicated and discuss this with the adolescent and his family. The patient refuses the transfusion, indicating that he wants to wait to see if the factor VIII will “kick in” soon.
You are concerned that the boy does not understand the gravity of the situation. How will you address this? Can the child refuse the transfusion?
A 16-year-old girl with diabetes is brought to the ED by her mother with concern for diabetic ketoacidosis...
The patient lives alone with her 2-year-old child, who is with them in the ED. The 16-year-old girl is refusing treatment for herself. She states that she is an emancipated minor and can manage her illness at home. In addition, she is very worried about her son, who is ill with a cold and not eating well.
The girl’s blood glucose reads “high” on the glucometer.
You are concerned that the girl is in diabetic ketoacidosis and that she may have associated cerebral edema that is compromising her capacity to make healthcare decisions. Can this patient refuse treatment? Is she truly emancipated? What measures can you take to treat her in the ED?
A 3-week-old boy with fever is brought to the ED by his parents...
The boy has a fever to 38.3˚C (100.9˚F). His other vital signs are within normal limits, and he is well-appearing with mild congestion but no other symptoms. He was born full-term, without complications, to an adequately treated group B Streptococcus-positive mother. His 3-year-old sister has symptoms of a cold.
Your practice for neonates aged <4 weeks with fever is to do a full sepsis workup, including blood culture, urine culture, and lumbar puncture. The parents are nervous about the lumbar puncture because of an adult family member who had a complication with the procedure in the past.
You wonder how to best involve the family in decision-making regarding the medical care of their child while adhering to practices that meet standard of care and are within your comfort level. What procedures do you need the parents’ consent for? When, if ever, would it be appropriate to proceed without their consent?