Challenges of Medical Decision-Making in an Autistic Pediatric Patient with Retinoblastoma and Osteosarcoma: A Case Study




Rapisand, Stefanie
Shum, Kathy
Hamby, Tyler
Bowman, Paul


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Background: In oncology, one of the most crucial decisions is whether it is appropriate to discontinue chemotherapy before the full course of treatment. Medical professionals must consider the risks versus the benefits, the patient’s quality of life, the appropriate role of chemotherapy, and the patient’s preference. The decision is difficult in pediatric patients who have encountered multiple malignancies while suffering from the untoward effects of chemotherapy. It is especially difficult in malignancies such as osteosarcoma where successful treatment involves the full course of systemic chemotherapy. Case Information: A 9-year-old autistic male with a history of retinoblastoma presented with pain in the right leg and an abnormal gait. A biopsy confirmed the diagnosis of high grade osteosarcoma. Neoadjuvant chemotherapy (protocol AOST 0331) was initiated with the administration of Cisplatin and Adriamycin, but was complicated by nausea, vomiting, febrile pancytopenia, and multiple life threatening infections. Nausea and vomiting was so severe that a feeding tube was placed for feedings and medication administration. After hip disarticulation amputation, chemotherapy was resumed, but was suspended at week 15 of treatment due to multiple life-threatening complications such as nephrotoxicity, endocarditis, and staphylococcus and streptococcus mitis infections. Discussion: The decision to discontinue chemotherapy early was not an easy one. The patient suffers from severe autism, is non-verbal, blind, intellectually disabled, and suffered many complications from his first and second pediatric malignancies. After considering the patient’s long battle with two pediatric malignancies and the numerous challenges he has had from undergoing chemotherapy, the patient’s parents and physicians agreed to discontinue chemotherapy. The patient is now receiving palliative care. Conclusion: Our case illustrates the importance of an individualized treatment plan when working with complicated patients. When physicians are faced with challenging medical decisions, it is important to remember, that with the help of their medical team and open communication with patients and their family members, making these decisions may not be as difficult and may be beneficial to everyone involved.