Tuesday, May 23, 2006
I came across an article from Feb 2006 in Advances in Neonatal Care which covered a subject not often discussed in Palliative Care circles. (At least not the ones I am privy to, and I am interested in Pediatric Palliative Care (mostly because my wife is a pediatrician)). The article on Implementing a Palliative Care Program in a Newborn Intensive Care Unit is available online free (for how long, who knows?) in a sample issue of Advances in Neonatal Care.
This issue became of particular interest to me since my son, Gabriel and daughter, Lindsay were born 3 months ago and were immediately placed in the NICU since they were born at 32.1 weeks old. Now before you get all worried about some NICU sob story, they are doing fine and growing well with all their fingers and toes. But back to my lesson learned...being a parent and patient advocate for my children let me in on a lot of new feelings that I had never experienced as a physician.
As a palliative care practioner I always felt I was keenly aware of how difficult it could be for patients and families to cut through all the medical mumbo-jumbo. But trying to get a prognosis for GOING HOME out of a NICU doc was impossible. I wasn't even talking death here, but something to at least plan on so I could let my work know when I might not be available for two weeks. "Well, if I had a nickel for everytime I was asked when the babies are going home...." and "I have been proven wrong so many times, I never try to speculate anymore." Ugh...so frustrating.
But the thing that caught my eye as a parent in the NICU was the two babies near ours that were not doing so well. Our NICU was nice and private but you could still overhear some very sensitive conversations. The NICU docs did an adequate job but I could see lots of room for improvement in language, context, use of silence and support staff.
So with that as a background I give you a pretty good article that serves as a foundation for anybody interested in starting a NICU specific palliative care program. Nothing wrong about the article so no need for any cynical remarks. Just a good quality review.
NB: in the same sample issue there are articles on "A Parent''s Guide to Palliative Care" and a good editorial on "Death in the NICU"