Something I think about a lot is the idea that as technology advances our understanding of diseases as well as our treatment methods for them, seriously ill children will live longer and hopefully qualitatively better lives.
So what should medicine and society be doing to keep up with them?
I’ll admit I have a special place in my heart for peds patients. A lot about the way this health care system works confounds me, but sick kids? I totally get them. I was fortunate enough to grow up as a patient in one of the best pediatric hospitals in the world, and as an adult I had the chance to work at a community home for the families of long-term inpatients at the same hospital. My work there inspired me to apply for a fellowship that helped support my development of a creative writing program for chronically ill pediatric patients.
So yes, I’m always on the lookout for innovative ways to make children’s lives better.
Enter the Medical Day Care Program (MDCP) at the Franciscan Hospital for Children. According to a recent article, the goal of the MDCP is “providing expert nursing care and educational enrichment to help children with complex medical conditions lead normal lives.” Field trips, arts and crafts, games with friends—these are experiences all children should have, and children with serious medical conditions shouldn’t be left out of them.
The MDCP also accomplishes an equally significant goal: helping the parents and families of these children. Caring for children with serious medical conditions is an incredibly strenuous task, so giving these parents a well-equipped place to leave their children during work hours makes a lot of sense, doesn’t it?
Here's another program that makes a lot of sense: I recently read an article about a new program in Massachusetts that gives palliative support to the families of seriously ill pediatric patients.
As quoted in the story, “We're trying to improve the quality of life and make the process of going through this type of illness more bearable,” said Stewart Landers, who oversees the program at the state Department of Public Health.
I’ve seen firsthand how crucial the support of hospice care is for patients nearing the end of life, and for pediatric patients, the issues are particularly challenging. Typically, someone can qualify for hospice care if they have fewer than six months to live and agree to forgo curative therapies. Palliative care is less common among pediatric patients because their prognoses are less certain and parents don’t want to give up on potential cures. Now, with less of these restrictions and more understanding of the needs of kids and families, hospice care is available for families at various stages of illness.
Though there are marked differences between the programs, common threads remain: sick children require (and deserve) specialized services to make their lives as “normal” as possible, and supporting their families and loved ones is an essential part of that process…and it’s nice to know there are organizations doing something to make this happen.