Regina S. Okhuysen-Cawley, MD, FAAP
An 8-year-old girl was brought by the local emergency medical services to a pediatric hospital for evaluation of progressive lethargy. On presentation, she was intubated for rapidly declining Glasgow Coma Scale score. Urgent head CT demonstrated a large midline intracranial mass with acute hydrocephalus. Systemic steroids were administered, and an external ventricular drain was placed emergently. She was admitted to the pediatric intensive care unit (ICU) for careful monitoring.
Her level of consciousness improved rapidly after placement of the external ventricular drain. Additional imaging and cerebrospinal fluid analysis, along with elevated serum alpha-fetoprotein and beta-human chorionic gonadotropin levels, were diagnostic for a malignant pineal germ cell tumor. Although large, the lesion was thought to have favor-able prognostic features, with an expected disease-free survival of 85% with treatment.
The child’s hospital course was complicated by severe diabetes insipidus, which required frequent venipunctures and administration of antidiuretic hormone. A peripherally inserted central line was recommended shortly after admission as workup progressed and because the child found the frequent laboratory tests distressing. However, the parents refused consent for this procedure.
A chemotherapy plan was also presented to the parents. Although they had been cooperative up to this point (except for their reluctance to allow central line placement), they were extremely hesitant to proceed with the recommended treatment, saying they needed a second opinion. The child was therefore transferred to a cancer center at their request. The neuro-oncology team at the accepting institution proposed a chemoradiation regimen similar to the one recommended at the transferring hospital. How-ever, the family quickly became antagonistic toward the care team and vehemently opposed initiation of therapy. They refused recommendations to internalize the ventricular shunt, claiming that the cancer center was “experimenting” on their child. The father further demanded that systemic steroid administration cease, asserting that it was equivalent to “raping” the child.
Numerous attempts were made to build rapport with the father, who frequently arrived at the hospital shouting, demanding to meet with the cancer center executives. Several multidisciplinary meetings were held to clarify aspects of the care that the parents did not appear to understand clearly. While the father was loud and intimidating, the mother was quiet and difficult to engage, which further hindered communication efforts.
The parents began impeding aspects of the child’s routine hospital care, including vital sign measurements, laboratory draws, medication administration, vascular access, and other interventions, prompting hospital staff to call to Child Protective Services (CPS) within 48 hours of transfer. A continuous bed-side sitter was introduced when it became apparent that the parents were giving the child herbal remedies without consulting the team. Although the extended family initially partnered with the medical team, they quickly withdrew from the hospital by the second hospital day.
Given the child’s symptom burden, overall good prognosis, and the need to internalize the ventricular drain to minimize infectious complications, protective custody was sought and obtained. The child’s shunt was internalized and chemotherapy was started. Unfortunately, the father became more combative with each passing day, acting in a verbally abusive manner toward the healthcare team. This resulted in the need for frequent nursing reassignments and the attrition of at least one experienced ICU nurse. Continued efforts to build rapport and a therapeutic alliance proved unsuccessful. A document providing notice of expectations was prepared and delivered to the parents in hopes of mitigating their ongoing disruptive behaviors.
Security guards were posted outside the child’s room while she was hospitalized in the ICU and following transfer to the floor. It became necessary to severely restrict visitation. In particular, the father was allowed to visit only by appointment and while escorted by security staff.
Fortunately, the child responded very well to treatment. She was subsequently transferred, with a behavioral agreement in place, to a different children’s hospital in another city to continue treatment once aspects of her care unique to the cancer center had been completed.
A collaborative relationship between parents and the medical team is established and maintained in the vast majority of pediatric cases, particularly when patient-focused, family-centered initiatives are in place. Situations in which the child’s best interest is compromised are fortunately extremely rare. This case involves a child with an aggressive yet readily treatable malignancy. The child’s parents displayed behaviors that made it difficult for them to partner with the care team and follow medical recommendations, including mischaracterizations of the purpose of treatment, argumentative and confrontational behavior, and paranoid accusations about malicious intent of the care team. They displayed un-sound judgment and made medically inappropriate decisions on their child’s behalf. By obstructing the child’s medical care, they therefore posed an immediate threat to her survival.
Although rare, circumstances in which surrogate decision-makers display an inability to collaborate on the patient’s care decisions require immediate attention, particularly when the patient is a member of a vulnerable population, such as children. A number of ethically reasonable avenues exist to mitigate conflict in extreme circumstances when usual attempts fail. In this case, efforts to partner with the family and provide family-centered care proved fruitless, owing to the parents’ behavior. Their efforts to support their decision-making authority were poorly received by the extended family. Acceding to their demands would have posed a significant threat of harm to the child and directly conflicted with the health care team’s moral obligation to provide medically appropriate care. Attempts to collaborate further by transferring the child to a different team or hospital were explored but had no meaningful benefit in improving the parents’ trust in the medical or surgical teams. Given the parents’ irrational behaviors, it is unlikely that additional resources such as palliative care consultations, conflict management teams, or a hospital ombudsman would have positively impacted the outcome in this case.
Ultimately, CPS involvement was necessary to enforce surgical and medical interventions on the basis of the parents’ inability to collaborate with the care team and with the anticipated benefits of treatment greatly exceeding the known risks. In this case, while calling CPS undoubtedly further strained a difficult relationship between the family and the care team, it was nonetheless necessary to ensure safe patient care. The care team had to navigate difficult waters in balancing the core principles of bioethics, ensuring access and implementation of indicated lifesaving medical and surgical interventions, assessing the proportionality of those interventions, and asserting the legal concept of parens patriae—the power of the state to intervene on behalf of a vulnerable person—in this case a minor placed at risk by parental abuse through negligent medical decision-making.
Although the vast majority of patient-clinician relationships are harmonious from the outset, difficult hospital environments, the stress of critical illness, sleep disruption, and other adverse conditions may precipitate outbursts in patients or family members who may have latent psychiatric illness, resulting in conflict that may not be easily navigated using routine collaborative communication strategies.
This case highlights institutional resources that may be necessary when patients or family members act in aggressive or otherwise disruptive ways. In this case, rapid deployment of CPS early in the hospital admission, a notice of expectations delineating behavioral parameters, restricted and supervised visitation to safeguard the child and other patients, and ultimately transfer to a hospital in another city able to assume the child’s care for completion of her oncologic treatment were all implemented to achieve a safe resolution to the child’s acute, life-threatening medical condition.