"We Didn't Consent to This"

Patients and their families have identified the need for ongoing and effective communication as one of the important aspects of medical care, especially when the cessation of disease-modifying therapies is being considered at the end-of-life (EOL). Despite recognizing that this communication is extremely important, clinicians are uneasy and find themselves inadequately trained to "break bad news" and manage emotional responses from the patient/family. The inherent difficulties in accurately predicting prognosis and discussing potential complications make these conversations even more challenging. In most circumstances, patients and their families want to know the truth about their disease and what will be done to make them feel better, and to receive enough information to help them choose a course of action. For many terminally ill patients and their families who have elected to transfer to the palliative care unit (PCU) for EOL care, the assumption is that most of these conversations have already been held, and the ongoing focus becomes managing these patients' physical and psychological sources of distress, validating their and their families' emotional responses and preparing them for what is to come. This case report illustrates the need for cultural understanding and clear communication among physicians, members of the clinical team, and patients and their family members.