How Should Clinicians Address a Parent's False Belief Generated by Denial or Grief About How to Care Well for a Child?

Abstract

Parents of children with complex health needs are often both vigilant and very knowledgeable about their child's disease state. That said, sometimes parents' hyperfocus, combined with their strong emotional attachment, can result in both false beliefs regarding their child's capacities and disagreements with clinicians about what is and is not clinically indicated. We examine ethical and professional responsibilities clinicians should consider when working with parents who hold false beliefs about their child with complex health needs. Case Joan K is a 10-year-old with Lennox-Gastaut syndrome, which entails recurrent seizures, severe cognitive and developmental deficits, and often progressive difficulties with swallowing. 1 Joan's mother, Ms K, is a single parent and has always been her daughter's primary caregiver. Despite Joan's developmental and motor deficits, she has been able to eat and maintain normal height and weight-which her mother believes is due to herbal supplements she includes in Joan's diet. For the third time in 6 months, however, Joan has been diagnosed with pneumonia and is now hospitalized for respiratory distress. It is apparent to the clinical team that Ms K, a licensed nurse practitioner, is devoted to meeting her daughter's needs, but also that Ms K has a view of her daughter that is at odds with Joan's actual abilities. The disconnect comes to a head when a nurse comes to Joan's bedside to administer intravenous antiseizure medication. Ms K objects, stating, "No, Joan takes this as a paste. I crush the pills, mix them with water, and spoon feed her." When the nurse responds, "I can't do that if she's having difficulty swallowing," Ms K states matter-of-factly that Joan leads a normal life and has no trouble swallowing. "I have been doing this for years, and there's no reason to change now." The young attending physician, Dr D, overhears this exchange and intervenes. "Ms K, as I think you know, difficulty swallowing is a sign of Lennox-Gastaut syndrome progression 2 and could be the underlying reason for her recurrent pneumonia. We can do a swallow