Pain

True story - of when I was the Executive Director of a day-training program for young adults with significant developmental disabilities.

When parents call it matters. When they call to ask if there had been any falls or incidents of concern it really stops your heart.

The parents had noticed their daughter wasn't urinating - and when that happens something is up. When they took her to the hospital an x-ray showed a clavicle fracture. It was about a week old. Now having been an athletic trainer I know how very painful and uncomfortable this injury can be.

Their daughter has significant developmental and intellectual disabilities. She was born blind and uses a wheelchair, needing full support by our staff for toileting, feeding and daily activities. To boot she is non-verbal, unable to communicate with words or phrases.

When I heard about her fracture my brain immediately tallied how often and frequent the staff mobilize her each day...and had been all week. Assisting her on and off her wheelchair, on and off the toilet and how each transfer requires lifting her body weight from her arms and inevitably exacerbating her injury.

There could be no way she didn't pull back or show signs of pain during these assists? There had been no incident reports or falls that the staff reported on, or did I miss something? Did we make it worse? Not to mention how did it happen in the first place?

When I reviewed our camera footage to see if there were any signs of pain, flinching or pulling back on her part during wheelchair transfers I could observe no signs that she was communicating pain to the staff. No pulling or resisting, no flinching, no hesitation by staff - there were no visible signs of pain or injury that the staff or myself could witness. How is this possible?

Research shows that pain tolerance differs amongst those with developmental disabilities, they tend to have a higher threshold for pain and typical signs of pain present differently. That being said a clavicle fracture is super painful and if you have one the last thing you would want is for someone to lift you up from your arms. Simply trying to lift your own arm up is painful, if even possible, let alone being expected to pull your body weight up from your arms with a clavicle fracture.

So if you cant talk, you can't move on your own and you know that each time you have to use the restroom someone will have to lift you from your arms to transfer you out of your chair AND you have a fractured clavicle what are your options? Well not urinating may be the best bet. If you refuse to drink then you won't need to go and if you don't need to go then no one will move you.

The fact that she couldn't tell the staff she was in pain even if she wasn't experiencing the pain in the same way you may expect doesn't mean her body wasn't expressing pain. She was suffering. Clearly enough so that she stopped urinating. Her body was expressing pain through biomarkers - escalated heart rate, possibly a low grade fever, respiratory changes and perspiration changes aligned with sympathetic nervous system responses would be present.

What if pain could be objectively measured? What if all of those biomarkers and metrics could be calculated and calibrated to her personal thresholds and synced to an app through a wearable accessible by staff and more importantly her parents. It wouldn't matter if she couldn't talk. The staff would have been able to see the discomfort and pain in real time - not a week out. Granted there would be no easy way to know the source of pain is the clavicle fracture but the intervention could have been immediate or within the first few hours of her attendance as opposed to having a full week go by and inevitably making the fracture worse.

Significant biomarkers linked to health and safety are of utmost priority. Pain, fever, illness, dehydration, blood pressure or respiratory changes would all be beneficial data to improve the care and expedite intervention for those that are unable to communicate or present differently when sick or hurt. There is too much at risk to have symptoms go unnoticed and it is disturbing to imagine how much suffering may be prevented.

MyKaleidoscope may just be that solution.