Vidatak: PATIENT QUOTES| Healthcare Inspirations: Inspiring Excellence in Patient Safety |
Patient and Family Quotes

HPNA has reviewed and approved this product. While this Mark of Endorsement validates the quality of the content of this product, the Hospice and Palliative Nurses Association does not wish to confer medical advice.

The following feedback was provided by patients from our research study at UCLA Medical Center as well as emails received from family members and patients:

"I wish that my hospital had this product for a jaw surgery that I had last week.  As I was awakening from anesthesia, my nurse kept prodding me with complicated questions and then kept asking me to repeat myself because she couldn’t understand what I was trying to say...  (I was actually pleading for her to leave me alone.)  A drugged up patient, just awakening from jaw surgery – hard to comprehend...  Go figure...  The idea for this product came to me there and then, unfortunately after researching the internet a bit, I see that you beat me to the punch.  I hope that your product is helping many out there."

"How can you talk to somebody with just yes and no's? It's almost too, it's almost impossible."

"Everybody is so different? You know, that's, that's the biggest problem. Uh, you know, people communicate differently."

"When I most needed to communicate I couldn't speak, and I couldn't really make myself understood. Nor did I feel like I was being given the opportunity to perform as an individual. I felt like I was being judged by a set of criteria for other patients. And, you know, that's natural. I am not an ordinary patient. I'm sure no one's an ordinary patient."

"It would create an interface between the patient and the staff that would in a way formalize the requirement that they pay attention to what the patient is trying to say. It would be like a passport. The person, even if they didn't use it, could wave it, say 'I matter. I can be heard. I have a stake in this. It's not just about you acting on me. It's about my being able to tell you what I want, what I'm doing'. I believe the concept itself is very strong, because it would both obligate the staff to stop and listen with a fresh ear, instead of saying, 'Oh well, they're intubed. They can't talk. Let's just write them off.' It could inspire, that is to say instill hope and empower those who are not as strong willed as I am."

"I kept trying to tell them I had pain in the back and uh they didn't understand what I was saying. Finally I just came to the point where I stopped."

"This is really good because it addresses the emotion and the needs... and like I said when you're intubated, emotion is the most important thing I think... and to explain what's going on."

"Maybe it could be part of the preoperative package. It's a lot of information, but if they had a photocopy on paper of this and said, 'this is your message board, familiarize yourself with it'. That could be very helpful, so that somebody isn't trying to cope with discomfort and trying to interpolate."

"If I was disappointed, it was the degree of frustration of trying to get someone to understand me."

"My grandmother passed away earlier this year after a series of strokes and since she had a living will and insisted no artificial measures be taken to keep her alive, we had to respect her wishes and just let her pass away naturally.  The WORST part of the experience was our inability to communicate with her well once she couldn't speak, playing the "guessing game" of asking everything we could think of to get a response from her and then hoping we got the answer right and got her what she needed.  If that facility had had EZ-Boards we would have been able to communicate SO much better and it would have alleviated an incredible amount of stress from all of us.  Thanks so much for creating such a worthwhile product.  It's ridiculous that nobody has thought of this before."

"I asked, I was told the I might be wake up intubated. And I told everyone that I was very frightened about that and I wanted to avoid that. So avoiding waking up was the most important thing. I didn't want that to happen to me. When I woke up, I was intubated. I was completely aware of it. So, avoiding that was the most important to me. Unfortunately, I was unable to do it."

"It would allow me to indicate things without having to draw them. The idea of pointing at a figure and then completing the sentence with the catch phrases is a good idea."

"They don't even consider giving you a piece of something as simple as a piece of paper."