As I watch the national news and talk to my friends working in hospitals, the two main themes are PPE (Personal Protection Equipment) and ventilators. I am not sure most citizens know what we mean when we talk about these things. As a CF/lung transplant patient, I know what it means to be on a ventilator because I’ve been on one for ten days out of my 46 years, and those ten days will never be forgotten.
As I think about the experience of COVID-19 patients who are going on ventilators surrounded by a global pandemic and without the support of the faces of those they love around the bed, I feel a deep tightening in my chest. I so desperately wish I could be at the bedside of each patient to calm them and to help the professionals who may or may not work with vented patients in the normal routine understand that lived experience. I can’t do either one of those things. So, instead, I have connected with other patients who have been on a ventilator and compiled my experiences with theirs.
I hope this list can serve as a guide to all of the amazing healthcare professionals who are on the frontlines and would like some supportive insight about how to interact with patients on vents. The patient experience continues after the tube is placed and, hopefully, all the way through to discharge home. God speed to all.
What Your Vented Patients Would Ask if they Could:
- Please narrate your care. My external body does not reflect my internal life. I am listening. I hear everything, even if I don’t fully understand it. Talk to me as if I were not on a vent.
- Give me updates on my health and orient me to time and place.
- Kind words like "you're doing great" and "just rest and let your body heal" go a long way to alleviate anxiety and confusion.
- I want my loved ones at my bedside to comfort me. Although you are here taking care of me, not having the faces of people I love around me makes me feel alone and (more than likely) scared. Can you please serve as surrogate family, even if for a quick minute? Find what is uniquely human about me and engage in a real human connection.
- I need to communicate! Whenever possible, please give me a pen and paper, a dry erase board and a pen, or a visual board where I can point to emoticons and letters to communicate. Look into my eyes and help me feel heard even though I can’t speak.
If you remember nothing else, always talk TO vented patients, not AT them or NEAR them.
Thanks for listening.
Special thank you to Kara "Missy" Lyven and Beth Peters for contributing their lived experiences in support of this blog.
Tiffany Christensen, CPXP
Vice President, Experience Integration
The Beryl Institute