Handbook for Mortals : The dying of children : Rare disorders

The problem in many childhood terminal conditions is uncertainty. Some children have rare and even undiagnosable problems. There actually may be no statistics the doctor can cite for you. But the doctor, child (when feasible), and parents together, even in these cases, can review the child's course and see when the hospitalizations Picture of a nurse with a hospitalized baby are becoming more frequent and longer, and when the enjoyment of life for the child seems to be fading. At these times, the goals of care must be revisited. Perhaps going to the hospital is no longer the best choice. Perhaps some medications could be stopped. Perhaps blood tests hurt too much to continue them.

One 3-year-old had a syndrome so rare that only a dozen people were known to have had it. He had been hospitalized only a few days each month. The boy then became more ill, never leaving the hospital for weeks. His mother stayed with him and his older siblings went to live with their grandparents. The family was torn apart by no longer spending any time together. The boy was receiving tests or medications every 30 minutes all night and day, and the mother was a sleepless wreck. Several teams of doctors were working on the child, none checking the schedule of medications and tests of the others. A palliative care nurse noted this and created a more humane schedule, reducing the number of tests and medications and grouping the others together. The child was moved to a room where the whole family could stay day and night. For the first time in 6 weeks, the ill child, his brother, sister, and both parents were together. At the end of eight weeks, it was becoming obvious that he was not going to live, despite all the aggressive treatments. His family gathered advice from doctors and grandparents and others, and decided to stop. Family and friends gathered for the little one's final day.

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Handbook for Mortals book cover Copyright © 1999, 2006 by Joanne Lynn. This extract from the Handbook for Mortals by Joanne Lynn, M.D. and Joan Harrold, M.D. is used with permission. To learn more about improving care at the end of life visit the main web site for Americans for Better Care of the Dying.
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