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Published on: September 20, 2018
Child with idiopathic pulmonary hemosiderosis: a case report from Pakistan with multiple ethical and moral issues
Shela Akbar Ali Hirani1, Arshalooz Rahman
1Aga Khan University School of Nursing, Karachi, Pakistan. shela.hirani@aku.edu
Insights
Idiopathic pulmonary hemosiderosis (IPH) in a Pakistani child led to anemia and lung issues due to delayed diagnosis. Effective palliative care was achieved through shared decision-making and open communication with the family.
Area of Science:
- Pediatric Pulmonology
- Rare Diseases
- Medical Ethics
Background:
- Idiopathic pulmonary hemosiderosis (IPH) is a rare condition characterized by recurrent pulmonary hemorrhages, leading to iron deficiency anemia and respiratory symptoms.
- Late diagnosis of IPH can result in significant complications and challenges in management, particularly in resource-limited settings.
Observation:
- A case report of a young Pakistani child with IPH highlights the difficulties in diagnosis and management, including ethical dilemmas.
- Challenges encountered included communicating the diagnosis, managing parental requests for treatment withdrawal, and ensuring the child's quality of life.
Findings:
- Shared decision-making and open communication with the family were crucial for providing effective palliative care.
- Early detection and the availability of hospice care are vital for optimizing palliative care for children with IPH.
Implications:
- This case underscores the importance of timely diagnosis and comprehensive palliative care strategies for pediatric IPH.
- It emphasizes the need for improved healthcare professional-parent communication and ethical frameworks in managing rare pediatric diseases in Pakistan.
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.
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