In recent years, modern medicine has made huge strides in helping chronically ill children live longer. That's good news for many kids and their families. But when it comes to managing pain, emotional distress and discomfort, the news is less good.
Just a few years back, The New England Journal of Medicine and the Journal of the American Medical Association published a study on the care of children with terminal cancer. It found that the vast majority of their parents — almost 90 percent — said their children had suffered "a lot or a great deal" in the last months of their lives. And that nearly a quarter of them were "often afraid."
It's a reminder of the limits of medicine, and of what's often missing in the care of chronically ill children. And it's why an increasing number of hospitals are employing palliative care programs, which include teams of doctors, nurses, case managers, bereavement counselors and others — who help families manage their children's care.
Dr Jerome Groopman, Chief of Experimental Medicine at Beth-Israel Deaconess Medical Center and a Professor of Medicine at Harvard Medical School. He's also a staff writer at the New Yorker and wrote the article, "Lives Less Ordinary".
Dr Joanne Wolfe, Founder and Director of the Pediatric Advanced Care Team, or PACT, a joint palliative care program between Dana-Farber Cancer Institute and Boston Children's Hospital. She's also an Associate Professor of Pediatrics at Harvard Medical School.
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