Topics covered: Cancer, Caretakers & Interpreters
While her husband underwent major surgery and treatment for cancer, Gina was left behind with very little access throughout their entire hospital stay. Federal law generally requires equitable communication for patients’ families and caregivers too. Here is her full story...
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Video Description:
The post has a video thumbnail with rose shading overlaid. The middle has a text bubble that reads “Excluded and left behind” in blue text with white background. In the video: A woman with shoulder length curly hair wears a soft rose-colored shirt.
Transcript:
In 2021, about three years ago, my hearing husband was diagnosed with cancer. I became his caretaker. I was working while I helped take care of him, and his needs, food, medicine, and overall health. Chemo really made him sick. In addition to chemo, he also had several surgeries. When chemo was done in August, he had a CAT scan a few weeks later where they informed him that he needed another surgery. There was a mass in his abdomen, in which the chemo didn’t shrink and it needed to be removed. His doctor recommended two specialized surgeons for that surgery; surgery can be complicated, especially after chemo. The body can respond differently. One surgeon was two hours away from us, and the other was located in New York City. Both were great options but we decided to go with the closer one. My husband and mother-in-law went to the initial consultation, in which they discussed the surgery then met with the Patient Care Advocacy team. They are hospital staff who focus on the needs of family members, spouses, siblings, next of kin, parents, and more. The goal is to support their needs, whereas the doctors and nurses focus on the patient. When my husband met with the patient advocates, he let them know that his wife is deaf and asked if they can ensure a sign language interpreter for pre-op, dietician meetings, discharge, and any other meetings that may arise. The patient advocate team said of course. My husband also informed them that we didn’t like Video Remote Interpreting (VRI); instead, we preferred in-person interpreters - live, face-to-face. Again, they said of course and could provide that. Great! We were feeling really good about this. One month later, my husband went to the final appointment before the surgery, and met with the patient advocates again. He again confirmed with them whether they will provide an interpreter. This time, they said: “Well, your wife isn’t the patient. We will not be able to provide an intepreter.” My husband explained that I was his caretaker, and NEEDED an interpreter. For example, after surgery, there was a specific diet to adhere and I needed to be able to understand that. The patient advocates offered a tablet for VRI as an alternative. Before this experience, my husband didn’t know what a VRI was, he just knew I did not like VRI. However, they demonstrated the VRI to him and at that moment, he thought it was good enough. When he arrived home, and explained that they had a tablet instead, I immediately said no. I wanted in person, so that they could understand all of my questions, what if the connectivity was poor and lagged, among so many reasons - technology issues was a huge concern. I insisted on a live interpreter. My husband didn’t know; it wasn’t his fault. Under the ADA, hopsitals must provide interpreters - not only for the patient, but for family and caretakers too. For the patient advocates to deny my preference was unacceptable. I sent them an email explicitly explaining my request, which happened to be the day before Thanksgiving… meaning, everything was closed and I received an out of office email. I called and somehow I was able to get a hold of someone and was able to get an in person interpreter… only for two hours. Tuesday morning, 5 to 7 AM - that’s it. I reluctantly accepted, and hoped that by showing up and truly seeing that I needed more, they’ll schedule in-person interpreters for the rest of the week. I arrived at the hospital early at 4:30 AM, met the interpreter there, which was great. My husband went into pre-op prep, while my interpreter and I waited. I saw him before he went in surgery, we spoke with the anesthesiologist as well as the nurse. All was well. It felt clear to me that everyone knew I needed an interpreter. After my husband went in, the interpreter was done with their shift. Remember, this was 2021 - COVID-19 was still very much around. So there was a rule that only one person could wait in the waiting room. That meant just me. Alone, with a mask, sitting and waiting. My in law parents and own mother couldn’t be in the waiting room and had to stay in a different area. Really, they had to stay outside. It was a very long surgery, it started at 7 AM and the surgen called my mother in law at 12:30 PM to inform her that the surgery was done and everything went well. My mother in law asked them if they already spoke to me, as I was still in the waiting room. The doctor said they would meet with me. My mother in law texted me informing this. While I was relieved, I was taken aback that they called my mother in law first instead of me. I waited and waited. Due to the masks, I studied the surgeon’s picture online, to get familiar with what they looked like, so when they came into the room, I’d recognize them. I waited, waited, and waited. Two hours. Nobody came to see me. No one. Other people had their doctor come, and meet, discuss, and finished. People were leaving, while I stayed. Finally, I had it. I went up to the patient advocate’s desk and told them that I knew that my husband was finished two hours ago, that my mother in law already got the call, yet despite me being his legal next of kin, no one has contacted me. Why? No one has seen me. I explained the ordeal I went through and they apologized, looked up details, confirmed that my husband was in recovery, and that I could go and see him, but only for twenty minutes. I wasn’t thrilled but took it. I went in, and found my husband, and they reminded me again that I only had 20 minutes. Well, no one had seen me wait for hours so I decided that I’d stay there until I’m kicked out. I stayed with my husband, my husband was in and out, very groggy, said hello. The surgeon and his intern came in, and started talking to my husband. They were wearing masks, I couldn’t see their faces. My husband was clearly still out of it, on strong medication, with lots of IVs in. My husband realized that I was not following, that I did not understand what was going on. My husband started interpreting. This guy was literally just in a 5 hour surgery, on fetanyl with IVs in, and he was trying to interpret, because he recognized that I wasn’t getting access that I deserved. I kept telling him to stop - but he stubbornly continued and of course it made no sense! He was on strong medication. After the doctor left, I stayed and finally the nurses told me I had to leave. They needed to move him, and they would get me afterwards. The rest was smooth sailing, I was able to visit him again in his new room, my in law parents and mother saw him too. Day 1, done. For the rest of the week, my husband recovered from the surgery in his room, and they nurses were great - they tried to work with me as a team. There were no meetings, however, the nurses would just come in, check vitals, then leave, especially because of COVID-19, no one stayed in the room for too long. It was just my husband and I. If my mother in law visited, I would have to leave and basically take shifts. On Thursday, we had an appointment with the dietician. My husband needed a special diet after surgery, he needed to follow the diet for about a month. I was especially concerned as to how follow the diet, it seemed really hard. For that meeting, I requested an interpreter. Again, I wanted an interpreter. I’m his caretaker and will make 100% of his meals. I needed an interpreter. They said they would provide one, and they let me know they scheduled one with the doctor at our 1 pm appointment. Just come to the office; however, we decided it’d be easier if your mom was there too. At that time, I thought: perfect, I’ll be able to meet with the doctor and ask questions while my mom takes notes. We met with the dietician, but there was no interpreter. They said, “Oh, well - your mom can sign and can interpret for you.” Absolutely not. My mom herself is hard of hearing. One ear is hard of hearing, while the other ear is completely deaf. Yes, she can hear a little bit, but she is my mother and she is not a certified sign language interpreter. Because there was no time, I reluctantly accepted. Fortunately the doctor was nice - slow and took her time to explain. My mom did struggle understanding with the masks - the doctor would move mask briefly, explain, then put mask back on. While the doctor was patient… that was my mom, and she’s not an interpreter. She is a member of the Deaf community too. The next day on Friday, they informed us that my husband will be discharged. He was finally going home! I asked for an intepreter at discharge, since I needed an interpreter for instructions. They said yes but couldn’t get a live interpreter. They offered VRI, although they acknowledged that I didn’t prefer VRI. At this point, I was done and again reluctantly accepted it. I wanted to go home. My husband wanted to go home too. They brought out the VRI for the meeting, and aftewards, we went home. I did some math - my husband went in surgery at 5 AM on Monday, we left Friday afternoon at around 1 PM. My husband’s hospital stay was about 105 hours total. I had an actual, certified, in person interpreter for 2 hours. I had VRI for 15 minutes. And I had my mother for 30 minutes. So that means I had access for 3% of the entire time. For the entire week. And, that’s not okay. Just because you are a caretaker or a family member, doesn’t mean that you should be excluded from access, especially for important medical needs for others. That week was so frustrating and so awful. I felt diminished and so excluded, and that was not the best experience. .]