Friday, October 19, 2007

It's for the Kids...

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.

7 comments:

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JC said...

I was fortunate enough to go to Sick Kids in Toronto, and they took really good care of me. There was an arts and crafts room, a library, and famous guests who came to cheer up the kids in the hospital. They brought in dogs and there was always something different going on in the hospital every time I was there. I'll be the first to admit that it made everything a lot more bearable. Almost as if I was going on a mini vacation away from school, except with lots of pain and medicine lol.

Jen said...

When my daughter had cancer we were lucky enough to be at Children's Hospital in London, Ontario (now part of the London Health Sciences Centre), and they had so many programs and supports for family and pediatric patients there that it was almost overwhelming. The Child Life specialists were amazing- everything from using dolls to explain surgery and chemo to giving her "spa days" when she was feeling up to it, they had a very comprehensive art therapy program, piles of supports for parents (both financial and emotional), regular opportunities to talk to counselors and psychiatrists for both patients and families, a school that the kids could attend so that they didn't miss too much work, and they even arranged "sleepovers" for my daughter's sister when they'd been apart for too long and her health permitted...the list goes on. They had constant visits by "celebrities" which always brightened up the day, and if you were there over a holiday they really went all out to make sure that the kids didn't miss anything.

We were lucky to be there.

Terry at Counting Sheep said...

While none of us ever wants to be sick or likes being ill, it seems particularly unfair and cruel in life that children should have to suffer. So much that happens to us in life is beyond our ability to comprehend, and even more so when it happens to kids.

I applaud your personal efforts, and the causes that you are supporting and informing your readers about.

Brava!

Anonymous said...

Laurie, I'd love to add your blog to my RSS feed, but when I tried, I got a message saying that the url didn't have XML content. Is there a way for you to XMLify it so I can RSSify it?

:) Leah of SWiG

Laurie said...

I will def. look into the XML-ification of A Chronic Dose. I wonder if it is as major a change as I think it is? I can be somewhat clueless...

On a side note, for whatever reason my archives and some sidebar buttons disappear in Firefox. People who know more about this than me say it is an issue w/ Firefox, not the blog template. Anyone have any insight into this--does this happen to you?

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