We make a living by what we get, but we make a life by what we give. – Sir Winston Churchill
There are many gifts that have resulted as a result of my family’s move to Austin, Texas. They are not tangible gifts, but gifts of affirmation it is our time to be here. We continue to meet fascinating people and explore how we can make a living while we make a life. One of the ways I want to do that, and I have done that throughout my career is as a physician.
I have also been exploring even more how I can lend my expertise as a patient advocate as health care finally shifts towards more patient-centered care.
So, how cool it is that I recently met Tom Giesberg who founded Voxgift in 2011. This guy is a software developer who saw a patient problem and created a tool to help. He saw how difficult it was for people on respirators to communicate with their caregivers and loved ones. Tom’s hope is that Winston–named for Winston Churchill, one of the world’s great orators–will free patients to communicate their needs accurately, effectively, and comfortably. You should all check out this cool app. And yes, it’s FREE!!!!
But there is more to the story. Let’s flashback to last year when I was in New Zealand. I was asked to make a home visit in the small town where I was practicing primary care. Ah, a home visit, that sure is patient centered! How awesome! There was a woman there who had an advancing neurodegenerative disease. Over the course of several years she had progressively lost more and more motor function, to the point where she had no voice. She was confined to a wheelchair set-up in their living room. She communicated with an iPad using a very similar app!
Using her mouth, she could move the stylus and choose the words she wanted to say. It would speak for her. At first I saw her for some nasal congestion. That can be very serious if you have compromised ability to breathe. I was able to relieve some of her symptoms and we were able to communicate with this tool. I was able to get to know her and her husband over a few months and several more home visits. She was quite frustrated to have a clear mind and be so immobilized.
This patient was on a Palliative Care Program but the issue of her wishes regarding resuscitation and hospitalization if she were to get sicker had not been addressed with her. We were able to have this sensitive discussion with the help of Voxgift Winston. She clearly expressed her desires to not be resuscitated. I even wrote in my journal that she had written, “God bless” and “I am ready to go on.”
Soon after, instead of a painful transport to the hospital for advancing respiratory distress, she died a peaceful death at home. Her husband and other caregivers saw and HEARD what she communicated on her iPad. After she died, I was invited back to her home to sign her casket before cremation. I’ve signed casts before, but never a casket.
My brief interactions in New Zealand with this amazingly strong woman who had suffered so much, left an impression on me. At some level I think it is no coincidence that I have met the person here in Austin who created Voxgift Winston. The gift we have as doctors is to listen to our patients voices. I think we also can listen to people inspired to make tools that help in that process. Patient’s voices need to be heard. I’m also excited about the additional potential this technology has: for helping bedridden patients communicate with their providers, for chronic care patients to have a voice in how they manage their care, and more.
Let’s keep our ears open. With Winston’s help, it will be easier to listen.