1. Salladay, Susan A. RN, PhD

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I'm caring for a 48-year-old patient who's just been diagnosed with advanced metastatic lung cancer. She's mentally challenged but functioned well in her supervised group home. Her aunt is her legal guardian, and she has no other living relatives. When she was admitted to the hospital, her aunt requested that she be full code.


When the patient's condition deteriorated, she was intubated and placed on ventilatory support. Now her aunt, who's been kept fully informed, has stopped coming to the hospital for visits. The patient, who's often conscious, seems bewildered. She clearly doesn't know or understand that she has a terminal illness. She asks for her aunt and wants to know when she can go home.


Is it ethical to conceal her diagnosis and prognosis from her? Can she be told even if her aunt refuses to inform her?- S.I., DEL.


Your first responsibility as your patient's advocate is to fully assess the situation. Start with a team meeting that includes the patient's nurses and other professional caregivers, including her primary care provider. Ask the tough questions: "What are this patient's rights?" "Where's her aunt?" and "What's the hospital's policy if a guardian appears to be acting against the patient's best interests?"


Working together, encourage the health care team to determine an ethical pathway, a step-by-step care path for managing the ethical issues surrounding this patient's care. Begin by inviting her aunt to meet with caregivers and the chaplain. If her reasons for not coming to the hospital are simple (such as lack of transportation), work with social services to help resolve them. If her reasons are more complicated, seek guidance from a counselor, hospice, and your hospital's ethics committee and legal counsel in considering a court order for temporary guardianship. With the patient's consent-and her aunt's knowledge-consider contacting staff from the group home to support her in her aunt's absence.


Most ethicists agree that a patient who can understand simple descriptions about her condition has the right to know her medical status. Anyone who's feeling pain or discomfort while in an unfamiliar location and surrounded by strange technologies certainly deserves honest information about what's happening and what to expect. She also has the right to comfort, emotional support, and other end-of-life interventions from professional caregivers, no matter where that care is given.