Editor’s note: The 2024 AAP National Conference & Exhibition will take place from Sept. 27-Oct. 1 in Orlando, Fla. For more coverage, visit https://bit.ly/AAPNationalConference2024 and follow @AAPNews on LinkedIn, Facebook and X.
With medical information more accessible than ever, it can be challenging for pediatricians to talk with parents who ask for unsafe or unproven treatments.
Michelle Terry, M.D., FAAP, a clinical professor at the University of Washington School of Medicine and attending physician at Seattle Children’s Hospital, has seen an increase in the number of parents and caregivers seeking nontraditional care for their children.
“Parents’ advocacy for their children’s well-being drives the search for novel treatments. However, caution is essential to avoid harm,” Dr. Terry said. “It is a balance between parental hope of medical advances to cure their children, scientific evidence and ethical considerations.”
Dr. Terry will present “‘Doc, I Was on the Internet and…’ When Parents Seek Unnecessary, Unsafe, or Unproven Treatment” (S1209) from 2:30-3:30 p.m. EDT Friday, Sept. 27 in room W303 of the convention center.
In recent years, Dr. Terry has seen parents and caregivers ask for experimental gene therapies, including one for Duchenne muscular dystrophy that received conditional approval from the Food and Drug Administration, despite failing a randomized clinical trial. She also has seen parents ask for unconventional therapies for conditions like autism or developmental delays, many of which lack scientific evidence and may pose risks.
Dr. Terry, a member of the AAP Committee on Medical Liability and Risk Management, will present several cases to illustrate risk management strategies when these situations arise. Key takeaways for attendees will be the need for respectful communication with patients and families and the importance of documentation.
“Begin by acknowledging the parent’s concerns and emotions,” Dr. Terry said. “Understand they want the best for their child.”
Clinicians also should explain the potential risks associated with unsafe treatments, even as some parents may discount those risks because of misinformation they have seen on social media. Dr. Terry will provide tips on how to approach such conversations.
She also will discuss “informed refusal” when a patient or parent declines a recommended medical treatment after understanding the facts and implications of not following the treatment. Informed refusal can occur in various medical scenarios, such as vaccinations, surgery and procedures, medications and end-of-life care.
“Clinicians can protect themselves legally by documenting these discussions thoroughly, including the risks explained and the patient’s decision,” Dr. Terry said.
She will discuss what pediatricians should do if parents or patients continue to refuse the treatments. In some cases, parental refusal can be considered medical neglect, which may lead to child protective services involvement, court orders compelling parents to follow recommended treatments or parental rights being terminated if a child’s health is severely compromised.
“Building trust and maintaining a respectful partnership are essential in these situations,” Dr. Terry said. “However, in some situations, the decision-making can have dire consequences.”
Browse the full conference schedule at https://aapexperience24.eventscribe.net/.
