We truly live in an instance information age today. Within
minutes, everything that happens in our society is published on Facebook,
tweeted on Twitter or posted on a litany of news, informational and personal
blogs. And most of the information we
read on these media sites we take as fact, especially when multiple sites are
validating the same story.
Why am I talking about this?
Well, when I read the recent LA Times article: “UCLA study suggests Partnersfor Children benefits patients, state” I was quite encouraged. The study truly validates from a cost
perspective what the families and care takers ‘on the ground’ have known all
along. But that is where I have a
problem. Why does it take thousands of dollars, studies, facts, fact-checkers
and a litany of red tape, algorithms and multiple layers of bureaucracy to
verify something that could be easily found out by interviewing or polling 100
families about their experience of caring for a chronically or terminally ill
child? For that matter, I can make the
case myself.
During my daughter Jillian’s 10 short years of life, she
required quite extensive medical care.
Based on my calculations we wasted over
a month of time getting care in the traditional model (traveling to the
clinic, finding parking in a crowded parking lot, waiting at the clinic for the
appointment, having the appointment, waiting for the blood draw, waiting for
the lab result, traveling back home, etc., etc. I haven’t even factored in the
anxiety and stress attributed with going to the hospital and being admitted at
times.)
Over 4,000 minutes lost. I would trade anything to get some of
those minutes back. Minutes which could
have been used to take a walk to the park, watch her favorite video, read her
favorite book, sing her favorite song, or
hear her tell us her favorite ‘knock knock’ joke. You see, as a parent with a child that has a
chronic health condition, often the question that resides in the back of your
mind is this: how long do we have? And
so, every moment we do have is so precious. Simply put, if care can be
delivered in the home, then we get those minutes back! This may not be ideal for all families, but that is why a program like Partners for Children is so crucial. And now we have
statistical proof it saves money! But
isn’t that just common sense, after all the old cliché goes something like
this: “time is money”.
To put a punctuation mark on this point, let me share a
final ‘fact’. I have kept in touch with
my daughter’s cardiologist, and a few months ago, I stopped by his office to
say hello. We talked at length and he stated something very moving and poignant.
He said that seeing the slideshow of Jillian’s life at her memorial service, changed
how he practiced medicine. It made him
realize that his patients have an entire life outside of the clinic – and
allowing them to have it is all
important. You see, he’s referring to
those precious minutes.
So back to my introductory thoughts. Since we live in this instant information
age, wouldn’t it be interesting to conduct a poll on FB or Twitter and confirm
what we already know from our families in these situations. Those minutes are precious. Let’s leave them for the family. And, by the
way, it saves money too.
