Updated: Jun 15, 2022
Lately, I’ve been reading quite a lot about “Patient Centricity” and greater “Inclusion of the Patient Voice.” This warms my heart and I truly hope this will prove to be a real change in improving healthcare, not just theoretical. This means a great deal to me as I’ve been advocating for young voices to be heard for my entire adult life both as a teacher and a pediatric social worker turned illness coach. Whether it’s inclusion in an IEP/504 meeting or medical care, I strongly believe that IF IT’S HAPPENING TO YOU, then YOUR VOICE SHOULD BE HEARD!
I’d like to tell you about true inclusion of the patient voice from many years ago… you might want to grab a few tissues for this one…
I was one of two newly hired pediatric social workers at Arnold Palmer Hospital for Children. My colleague and friend covered PICU and Step Down and I covered everything else on the general floors. The hospital was only a year old and fairly small then and we were the only pediatric social workers at the time. I worked with patients and families dealing with all kinds of diagnoses including Cystic Fibrosis, HIV/AIDS, Crohn’s, Diabetes, and even Cancer.
My very first patient was Joshua. I met Joshua and his mom for the first time as they were facing, yet again, another round of chemo for his ALL (Acute Lymphoblastic Leukemia). Joshua was only 5 years old and the first 2 or 3 rounds hadn’t worked. As Joshua’s mom began telling me about their journey and the pain and suffering he had encountered, I watched this beautiful boy with huge brown eyes as he played in his hospital bed. I could not begin to imagine what all they had been through as he fought for his life.
Finally, she told me that Joshua had said NO MORE. He told her he just didn’t want to do any more chemo. She said she asked him if he knew what that meant and he told her, “Yes, mommy. It will be just like going to sleep.” This was such an impossible situation for everyone - the absolute ultimate heartbreak - and something no parent should have to face, but so many have and do.
Ultimately, his doctors along with his family decided to respect Joshua’s wishes. He would have been 37 this November.
But here’s the thing, JOSHUA’S VOICE WAS HEARD … as were the voices of his parents. When I think of including the patient voice, I will never not think of him.
If you are operating in this space, I’d like to ask you to think of Joshua too as you make sure to include each and every patient’s voice that you have the privilege to hear! 💜