Those Precious Minutes
Posted on September 24, 2012
This is a contribution by Jim Santucci, Chair of the CHPCC Family Advisory Council and also the Development Director at Kara. Jim is an active public speaker sharing his experiences with his daughter and his advocacy for pediatric palliative care. He is a frequent contributor to the CHPCC blog and has written Reframing Typical, Why I’m Invested In The Coalition, and Legislative Day 2012.
Those Precious Minutes – Leave them for the Family
We truly live in an instant 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 Partners for 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! 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 Facebook 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.
This is a contribution by Jim Santucci