Ethics and Research with Children: A Case-Based Approach

By Eric Kodish | Go to book overview

18
Involving Children With Life-Shortening Illnesses in Decisions About Participation in Clinical Research: A Proposal for Shuttle Diplomacy and Negotiation

Myra Bluebond-Langner, Amy DeCicco, and Jean Belasco


CASE DESCRIPTION

Just a few a months shy of his 13th birthday, Jeremy Foster, a mentally gifted, social, and artistically talented boy, was diagnosed with an anaplastic astrocytoma, a malignant brain tumor (high-grade glioma).1 Due to its location the surgeons were able to remove only a portion of the tumor. Even when fully resected, the prognosis for this tumor type is poor. With only a partial resection of his tumor, Jeremy had only a 20% chance of surviving five years.

After surgery, his treatment options were radiation alone or radiation with chemotherapy. There were no open clinical trials at the time. Jeremy received radiation for approximately 40 days, followed by PCV therapy—a combination of three chemotherapy agents—procarbazine, vincristine (Oncovin), and lomustine (CCNU) used for high-grade gliomas.2 Eleven months later, chemotherapy was stopped due to persistent thrombocytopenia.3 The plan was to continue with regular blood tests, monthly examinations in the clinic, and MRI scans every 3 months.

Three months later, 14 months after diagnosis, Jeremy, now almost 14 years old, had clearly moved into puberty. There was fuzz on his lips and his voice cracked. Despite improvements made with intensive physical, occupational, and speech therapy, permanent brain damage persisted. Doctors noted during his regularly scheduled monthly visits that Jeremy still had “significant expressive and receptive aphasias”4 such as word finding and reading impairment, as well as a myriad of neurologically derived physical problems such as a “right-sided hemiparesis,5 right-sided muscle atrophy, a right steppage gait6 and a facial droop.” He wore a brace on his leg and took Risperdal, which controlled tumorinduced behavior problems such as poor impulse control. In addition to attend

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