Accessible Health Care: 2. Story of an Advocate and Patient Transcript
[Narrator is signing]
No one can predict if or when a medical emergency will occur.
Cuong Nguyen didn’t think he’d be in a serious bicycle accident that would result in a 40-day hospital stay and extensive physical therapy.
And he certainly didn’t think he’d find himself in an ongoing battle with the hospital to get regular access to a sign language interpreter who could help him understand his care and treatment plan.
[Cuong Nguyen is signing]
Hello. My name is Cuong Nguyen.
I was in a horrific bicycle accident. I was in such a bad accident, someone else had to call the ambulance and they came and brought me to the hospital. I was there for 41 days but I assumed the hospital would take care of all of my needs and provide interpreters. But guess what? I had altogether a total of 11 hours of interpreting services over a 41-day period of time which did not meet our needs at all. I have four stories I would like to share about that experience that have scarred me and I want to relate them to you today.
The first one is about losing my faith in the hospital in the first place. I had to have surgery. I was unconscious for a week. When I woke up I was extremely weak. There was a nurse that would come to my bedside with a chart. Now of course I trusted them to take care of me. Suddenly the nurse put my bed up way too fast and I tried to gesture to her that she needed to slow down. But she ignored me and I looked for others for help.
My wife was in the room and I thought thank goodness, my wife is here and she saw my face which was absolutely white and knew I was in trouble trying to stop the nurse. And the next thing that happened, I blacked out which was the first time my faith was shaken.
The second experience was my loss of freedom. The hospital was going to put me in restraints or needed to put me in restraints so I didn't pull out any of the tubes that were in me. But they did not let my wife know this. Beforehand, they were going to do it and I just woke up with my arms tied. Now remember I had already lost faith in what the hospital was doing to me and for me and then I lost my hands which in essence meant I couldn't talk. I couldn't communicate and it was extremely traumatic to lose my freedom.
The third thing, I lost my self-esteem - my feeling of self-worth. So as I lie there in restraints, my wife, through writing, is trying to plead with the hospital to at least loosen the restraints so I can communicate. And it would also make me more calm because I was feeling panicky and trapped in the bed. The nurse completely ignored every note my wife handed to her or anybody else on the hospital staff.
Finally, my wife texted my sister who could hear. My sister then called the hospital and spoke to the hospital staff and got them to loosen the restraints so that at least I could calm down somewhat. But when I think about it, what that means is that our voice, represented by the notes, was secondary to the voice literally of a hearing person. Think of how devastating this is emotionally for a person. I felt a destruction of my self-worth.
The fourth thing I lost was hope. It was so stressful for my wife who is also deaf, constantly fighting to get interpreting services. Constantly fighting for my access. Constantly fighting to take care of me.
I had a couple of friends who came to visit me and told me they knew the system was not providing me what I needed. By ignoring my repeated pleas of interpreting services, they were violating my rights. They urged me to contact the communication services for the deaf because they had an advocate. Thank God! The advocate finally came and I finally had someone there for me.
The advocate fought to make sure that I had interpreting services and I was so excited because I thought finally I would have access to communication about my care. And what happened is they assumed that I really didn't need them. That I had no rights, no rights to access which destroyed any hope I had left.
When I finally was released from the hospital, my wife and I had a conversation. Now she is working for the medical facility that I was in and was worried about losing her job because of the possibility of a conflict of interest if we sued them. But I thought no one should have to suffer like we suffered and I needed to do something for them so we decided to be brave and contact the advocate again and ask for their help.
They were so friendly helping us through the whole emotional experience and communicated in our first language. They helped us write a letter of complaint so we could file a grievance in written English. That was our first step. We sent a letter to an attorney and the attorney said they reviewed it and thought it was extremely serious and came to speak to us and said they could provide consultation to us free of charge. They provided an interpreter for free as well. It was a wonderful opportunity to talk about our story, let them ask us questions. And then they said we had a valid complaint against the hospital.
So finally someone accepted us as our clients. We worked closely with Rick to sue the hospital which suddenly they had their eyes opened. Suddenly they were willing to listen to us. Suddenly they were willing to help us and I think though because we had the success, we built a better bridge for the deaf community and patients in the future.
So for you who are watching, if you have an experience like this, there are people out there. This video, advocates and attorneys can help make sure that our rights are respected. I wish you good luck and I hope this video is helpful for you. Thank you for listening.