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Kristina E. Catrine, MD; Nneka O. Sederstrom, PhD, MPH, MA, FCCP, FCCM; Maurice G. Sholas, MD, PhD; Linda B. Siegel, MD, FAAP
An eight-year-old boy was diagnosed with a posterior fossa medulloblastoma with extensive leptomeningeal metastases to the spine and spinal canal. Prior to diagnosis, he was developmentally appropriate and progressed typically in school, although with poor academic performance. His mother was well-rooted in her community and was the sole provider of supervision and care for her son. At diagnosis the patient was neurologically intact with the exception of minor arm weakness, increased fall frequency when walking, urinary retention, and symptoms of hydrocephalus. He underwent gross total resection of the primary tumor and ventriculoperitoneal shunt placement. Following surgery, he developed mild, right hemiparesis and ataxia. He began a lengthy, extensive hospital course.
He started radiation therapy 18 days after his craniotomy. After the second dose of craniospinal radiation, he developed weakness, sensory loss in all four extremities, and a neurogenic bladder. After the third dose of radiation, he developed profound quadriplegia and respiratory insufficiency, requiring intubation and mechanical ventilation. A spinal MRI demonstrated an increase in T2 signal and a striking decrease in enhancement throughout the spinal cord, concerning for vascular compromise. Radiation therapy was continued in hopes that his spinal cord function would improve. Tracheostomy and gastrostomy tubes were placed.
Six weeks after diagnosis, the patient developed anxiety and emotional liability secondary to grief and loss of his functional independence. A specialist in physical medicine and rehabilitation was added to the treatment team. She was the first to suggest comprehensive inpatient rehabilitation services. The patient’s mother rejected this recommendation, believing that her son would recover. He remained hospitalized in the pediatric ICU; his mother continued to resist medical recommendations, including functional remediation of his paralysis and weakness, standard chemotherapy, and radiation therapy. A second medical opinion confirmed that the patient had C4 quadriplegia with a 1% to 2% chance of two to three levels of caudal recovery. His mother refused to accept her son’s diagnosis and poor prognosis and refused to allow the staff to talk to her son about his diagnosis or prognosis. She declined most standard treatment options, such as neurogenic bowel and bladder management programs, long-term ventilatory support, and transfer to a comprehensive rehabilitation center. The conflict between the mother and the team regarding a plan of care based on realistic goals caused significant patient and family stress, staff moral distress, and the modification of preferred treatment protocols.
The goal of discharge home under the mother’s care was established after several care conferences at which the Ethics Committee was present. The patient was discharged home via ambulance 14 months after his initial cancer diagnosis. His mother declined or refused delivery of standard equipment provided for patients with her son’s diagnosis. She terminated relationships with all medical professionals who would not adhere to her preferred treatment plan, as well as those who insisted on disclosing the spinal cord injury diagnosis to her son. She did not follow up with outpatient medical care. Her son was readmitted two months after discharge with respiratory insufficiency following an unspecified respiratory illness. After a three-week stay, he was discharged home with more seating and positioning equipment, a nighttime bilevel positive airway pressure machine, and a cough assist device. He died at home six weeks later after a presumed respiratory arrest. No autopsy was performed.
While this patient’s case involves a number of ethical issues, this analysis addresses the problem of truth-telling and disclosure to a minor child over parental objection. Parents are traditionally granted authority to make decisions for their children because they are presumed to have the child’s best interests at heart and presumably are the most invested in good outcomes for their children. Parental authority is not absolute; the state can intervene if a parent is determined to not be acting in the child’s best interests.
A request for nondisclosure requires the team to balance the child’s need for information with the parent’s decision-making authority. In general, pediatricians believe that truth-telling fosters trust and that clinical information should be disclosed, even with young children, in a developmentally appropriate way. Obtaining assent for procedures or research respects a child’s developing autonomy and is recommended by the American Academy of Pediatrics.1 Withholding the truth from a pediatric patient may cause a number of harms. Inadvertent disclosure engenders mistrust. Nondisclosure may lead a child to feel isolated from his/her mother and caregivers. Like adults, children fear the unknown and are relieved by knowing what the medical problem is and what to expect.2,3
Parents and children may collude to avoid talking about prognosis, but research shows that both parties feel better when the truth is out in the open.4 For these reasons, a care team’s prima facie obligation to be honest with the patient generally outweighs a parent’s desire to protect a child from distressing information. Withholding information about a patient’s diagnosis or treatment should happen only at the patient’s request or when the team has established that disclosing such information would pose serious psychological harm to the patient and is thus contraindicated. (This is known as invoking the therapeutic privilege.)
Disclosure against the mother’s wishes will likely jeopardize the medical team’s therapeutic alliance with her. They should work with her to try to understand her rationale for nondisclosure, including any relevant cultural issues. If possible, the team should include extended family, clergy, or others to help partner with the mother. While withholding information is distressing to the team, this patient has lived his life within this family dynamic and will need to live in his family unit after hospitalization. If he and his mother are colluding in not discussing the prognosis, the team risks damaging their relationship if they force the issue.
The patient’s mother made it clear that she would not maintain a therapeutic relationship with anyone who disagreed with her approach. In similar situations, medical teams have compromised and told the family that they will not disclose information against the parent’s wishes but that they will not lie if the child asks directly.5 Others have disclosed over parental objection after determining that the situation does not meet the criteria for exercising the therapeutic privilege. An argument that this patient’s mother was not able to act in his best interests could have been made after his readmission. Invoking the therapeutic privilege could have been justified at this point, if not earlier.
1. Katz AL, Webb SA; Committee on Bioethics. Informed consent in decision-making in pediatric practice. Pediatrics. 2016 Aug;138(2):e20161485.
2. Vernick J, Karon M. Who’s afraid of death on a leukemia ward? Am J Dis Child. 1965 May;109:393-397.
3. Koocher GP. Psychosocial issues during the acute treatment of pediatric cancer. Cancer 1986 Jul 15;58(2 Suppl):468-472.
4. Rosenberg AR, Wolfe J, Wiener L, Lyon M, Feudtner C. Ethics, emotions, and the skills of talking about progressing disease with terminally ill adolescents: a review. JAMA Pediatr. 2016 Dec 1:170(12):1216-1223.
5. Sigman GS, Kraut J, La Puma J, Disclosure of a diagnosis to children and adolescents when parents object. A clinical ethics analysis. Am J Dis Child. 1993 Jul;147(7):764-768.