Providing care in chronic disease: the ever-changing balance of integrating palliative and restorative medicine.

摘要

Caring for children who have a chronic life-limiting illness can be emotionally and physically challenging. Just as families may struggle with whether they are making the right decisions, care providers struggle with whether they are giving the right advice, predicting the medical course correctly, and making the correct medical decisions. Uncertainty is a constant for the family and the care provider. The willingness of the care provider to develop a relationship with the family that involves continuing communication and re-evaluation of the child's condition and the family's perspective can relieve some of the emotional and physical suffering associated with a chronic disease and support the family in times of hope and grief.