title: Child with idiopathic pulmonary hemosiderosis: a case report from Pakistan with multiple ethical and moral issues.
abstract: This report discusses the case of a young Pakistani child diagnosed with idiopathic pulmonary hemosiderosis (IPH). The key features of IPH were iron deficiency anemia and pulmonary symptoms due to recurrent pulmonary hemorrhages. The child showed complications of the disease process because of late diagnosis. Because various ethical and moral issues were associated with the diagnosis and management of IPH, this case provides insights about the care burden of health care professionals and a child's parents in a Pakistani pediatric setting. During the course of the child's treatment at one of the private tertiary care settings of Karachi, Pakistan, the key challenges were as follows: declaring the diagnosis to the parents, dealing with the request of the child's parents for withdrawal of ventilatory support and withholding treatment, deciding the code status of the child, and ensuring the quality of the child's life after discharge from the hospital. It was learned from this case report that shared decision making and open communication with the child's family enabled the pediatric health care professionals to determine what was in the best interest of the child, resulting in provision of effective palliative care to the child. Moreover, it was realized that early detection of the disease and availability of hospice care can facilitate palliative care of children diagnosed with IPH.
authors.affiliation: Aga Khan University School of Nursing, Karachi, Pakistan. shela.hirani@aku.edu
authors.forename: Shela Akbar Ali
authors.initials: SA
authors.lastname: Hirani
authors.forename: Arshalooz
authors.initials: A
authors.lastname: Rahman
mesh_terms: D002648:Child; D057210:Delayed Diagnosis / Q000941:ethics; D006297:Health Services Accessibility / Q000191:economics / Q000941:ethics; D006486:Hemosiderosis / Q000175:diagnosis* / Q000628:therapy*; D016304:Hospitals, Private / Q000191:economics; D006801:Humans; D008171:Lung Diseases / Q000175:diagnosis* / Q000628:therapy*; D008297:Male; D010154:Pakistan; D010166:Palliative Care / Q000941:ethics*; D011368:Professional-Family Relations; D000097545:Hemosiderosis, Pulmonary