In “Lives Less Ordinary,” Jerome Groopman’s powerful and timely look at the complex care of chronically ill children, the first child profiled is being treated at Boston Children’s Hospital for a rare disorder of the mitochondria.
This is an interesting coincidence, as a disputed diagnosis of mitochondrial disorder has been central to a nasty recent custody dispute between the hospital and another family.
Among other things, that was a cautionary story about the consequences of communication and trust badly broken down. An ethics consult was called, and recommendations made, but it is unclear how well they were heard.
And so this story by the endlessly insightful Groopman serves as a welcome view into doctor-patient/family communication at its best. And the families sure need it.
Groopman’s story, in the January 20 New Yorker magazine, is subtitled “Chronically ill children are living longer than ever. How should we care for them?”
In answering that question, the starting point would appear to be: first listen, then do no harm. That is, get to know the patient and what he or she values. So it is no coincidence that Groopman, professor of medicine at Harvard Medical School and chief of experimental medicine at Beth Israel Deaconess Medical Center in Boston, focuses on the palliative care specialty. Taking the time to know the patient is a key aspect of the palliative speciality.
Don’t miss Groopman’s story. Here is a taste of what you’ll find.
The PACT, or the Pediatric Advanced Care Team, is a group of physicians, nurses and social workers from Boston Children’s Hospital and the Dana-Farber Cancer Institute.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.