On a roll

So, perhaps I didn't jump in or jump off... rather, I rolled in!  Posting on day 2 makes me feel like I am on a roll - two post feels more like a real blog than one post did. My goal for today is to post sentences that make sense!  I read a couple of sentences from yesterday's post that suggest that I was dozing a bit as I wrote :)  I have developed a new skill in doing that.  I can close my eyes, feel my mind drifting off to sleep and still type!  But it is often very odd things that I type, that's for sure.

People frequently ask me how and why I approach pediatric palliative care as I do - from a community based, natural environment of the child perspective.  The answer is actually quite simple:  I was not trained as a health care provider.  I didn't go to medical school or nursing school.  Thus, I think more about where a child exists than about where a child is treated.  Most pediatric palliative care programs originate in a hospital or a hospice/palliative care program. A medical model drives the conceptualization of what palliative care should be, and that is a set of services and a care plan that includes rich set of medically based interventions. 

I, on the other hand,  trained in a program (KU's special ed program - #1 in the nation, of course!) in the 1970s where the focus was on the individual.   We believed that the child drove the bus (or built the pink castle) and we were there only to lend a hand if the child got into a jam. Children needed to learn to survive and thrive. 

When you think about it, children spend, during the school year, about 33% of their time at school and another 33% of their time sleeping.  By now, you have probably figured out that there is another 33% of their time remaining (okay math majors, 34% remaining!).  Think about your childhood or the childhood of your children.  Did you spend your evenings sitting in the living room talking to your parents?  Of course not!  Rather, kids and teens (*side note:  whenever I use the term 'children', 'child', or 'kid', I am referring to every creature from birth to age 21 ... or sometimes even older) spend most of their afternoons, evenings and weekends with friends, talking to friends, hanging out with friends at Youth Group, doing activities with friends at Girl Scouts, playing sports with friends, just playing with friends.... they are busy LIVING!!!  Thus, the focus on their physical, psychological, social and spiritual needs must exist in the places they are living, growing, playing.  Their friends need to be 'doing' palliative care with them; their teachers, spiritual leaders, coaches, bus drivers, all need to be aware of what the child is experiencing, and be ready to help them continue to live, grow and achieve to the greatest extent possible. I believe in "takin' it to the streets", and the 'it' is palliative care.

Palliative care, therefore, needs to focus on quality of life. It needs to address how a child, with a serious illness, can grab the gusto and get the best out of life.  To work, it has to start when a child is diagnosed or injured - when their big challenges are beginning.  Our palliative care program does not work on helping a child die - rather, we help kids live.  And, of course, if the end-of-life becomes a child's reality, we take care of the child and family and enable them to drive the bus, making the decisions that they want/need to achieve an end-of-life situation that is what they ordered.

Tomorrow, I am going to talk about family... moms, dads, brothers, sisters, pets, grandmas, grandpas, cousins, aunts, uncles and all the greats, grands, seconds, once-removed and anyone else that is hanging around!  Because it is really true - a serious illness in a child affects every person in the family.