CARE OF THE CHILD WITH A LONG-TERM, LIFE-THREATENING ILLNESS: SOME PRINCIPLES OF MANAGEMENT

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Abstract
THE PHYSICIAN needs to care for the child who has a long-term, life-threatening disease, such as ulcerative colitis, nephrosis or rheumatic fever, with the same competence and sureness as he applies to managing the disease. Such illnesses are psychologically as well as physically hazardous. Because of the variability of physician, patient, family, and disease, principles of care cannot be described nor applied in a simple fashion but rather with attention to individual differences. DISCUSSION OF THE DIAGNOSIS Discussion of the diagnosis must be straightforward and honest, reflecting the exact state of affairs without over-or understatement. Although truthfulness is an important principle, the doctor tempers it in order to express it to the parents and child at a time and in a manner that is helpful and understandable rather than overwhelming. Some tolerate it better if they are given the information all at one time while others benefit more from a gradual presentation. The parents may need to have the diagnosis, as well as the treatment, explained many times before they are able to understand and accept the painful reality. Where practical, the use of a consultant to confirm the diagnosis, treatment, and prognosis can be a significant aid to the family's acceptance. COMPETENCE Nothing allays unwarranted anxiety as effectively as competent, conscientious care. As Engel has emphasized, this is "the first and major requirement of the correct psychotherapeutic approach." The family's fundamental need to believe that they are entrusting their child to the best doctor available leads them both to over-value his skills and, perhaps not incongruously, to question his experience: "Have you seen other children like this?" "How many children like me have you taken care of?"
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