Truth-telling and an adolescent diagnosed with a malignant brain tumour: who are we protecting?

Case report summary A previously healthy 16 -year -old female of Asian descent pre sented to a pediatric hospital with a three-month history of headaches, and having missed her menstrual cycles for approximately seven months. She was first seen by a family physician who ordered a brain CT scan , which showed a lesion in the right frontal area. She was taken to hospital after awaking with left -sided numbness and weakness, facial weak ness, and slurred speech. On neurological exam, she had bilat eral sixth cranial nerve palsies and bilateral disc edema. A brain MRI also confirmed the right frontal lesion. She underwent a right frontal craniotomy for biopsy of the lesion a day after admission. Resection was not attempted given the diffuse and infiltrating nature of the tumour. The pathology was Gliomatosis Cerebri, high -grade glioma. She was initiated on Dexamethasone and Phenytoin for seizure prophylaxis. Neuro-oncology was asked to consult and a disclosure of the diagnosis and poor prognostic outlook was shared with the girl’s parents. The father spoke limited English , but assumed the role of interpreter for the mother , as was his request. The parents were grief-stricken. Chemotherapy and radiation ther apy were offered as treatments , but it was made clear to the parents that they were not curative interventions. Palliative care was raised as an option , but refused by the parents. They requested that they be the ones to disclose the news to their daughter. She was started on her first cycle of Temozolomide. During her course of chemotherapy, she was considerably unstable, ataxic, fatigued, and demonstrated a left upper extremity neglect. She was impulsive, required constant supervision and , yet , remained lucid. Parents had still not dis closed their daughter’s prognosis to her, but the patient was aware she had a “cancerous tumour”. Radiation therapy was also initiated at this time. She was heard to make statements about returning to school and finishing her senior year, and seeing her friends again. Staff nurses also noted her saying, “…people live with this”, when referring to her tumour. As well, she was observed by a nurse to have been researching her diagnosis on the world-wide-web on the unit computer. A follow -up meeting with the parents revealed that although the patient was aware of her diagnosis, she was not aware of the grim prognosis. The parents expressed that they were “hoping for the best” and for any recovery. At this point in time, the patient was noted to be “teary” and “sad” by the nursing staff , partly due to her hair loss and exhaustion from her treatments, and to the side effects of her steroid therapy. The members of the health care team, particularly the nursing staff, grew increasingly uncomfortable with this ethical dilem ma: Should the patient have the right to know the truth and who should tell her ? Whose rights were they protecting, the patient or her parents? Did ethical or moral distress play a fac tor in this dilemma? It is these complex questions and additional contributing vari ables that presented a challenge for the nursing and inter-pro fessional health care team. With reference to the posed case study, the following discussion will highlight the notion of truth-telling, from the perspective of the adolescent patient, along with the ethical principles that relate to the situation. Although this article does not strive to reach a universal deci sion for practice, recommendations for nursing care will be shared. Given the patient’s diagnosis of a malignant brain tumour and anticipated illness trajectory, neuroscience nurs es will appreciate the following discussion and its applicabili ty to their practice from an ethical standpoint.

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