Over a month ago, I became ill, throwing up all through the night. Paramedics came in the morning wearing masks, which is the standard procedure nowadays to protect against COVID-19. Luckily, my caregiver was there to tell them I could understand and showed them the information sheet on my door. They brought the information sheet with them to ER. Consequently, the ER team who was assigned to me talked to me like an intelligent adult and knew my yes/no signals. They ran tests, including the one for COVID-19.
Then they told me I would be transferred to another hospital where I hadn’t been before. I started freaking out for two reasons. First, I didn’t have my communication board as I usually do. Secondly, because of COVID-19, hospitals wouldn’t allow visitors, not even caregivers. Eye, head, and hand gestures were the only methods I could use to communicate.
At the other hospital, I was placed in isolation until test results for COVID-19 returned. Fortunately, the nurse was conducive to my gestures, such as putting my hand to my mouth to indicate I wanted to drink or pointing to my behind to indicate I had diarrhea. A couple times a technician came during the night to draw my blood. I wish they would have told me the reason, but they just told me to relax my arm as they tried to find a good vein.
As morning dawned, the nurse announced that I would be transferred to another floor since I was tested negative for coronavirus. While my heart cheered, my mind yelled, “Why aren’t you discharging me?” Around 5 p.m., orderlies took me up to the fourth floor where I was greeted by a pleasant nurse who brushed the hair out of my face, I tried to tell her to adjust my pillow by eyeing it and pointing to it with my hand, but she had to call another nurse to help her understand. The evening was long but ok. Since the runs had subsided, I could use the bedpan. Only one aide understood this, unfortunately. When she went off duty, I had to urinate in the diaper and hit the call button.
The third shift nurse came on duty, who made my hospital stay worse. When he connected a new I.V. bag to me, it plugged it to the wrong port. I knew this because (1) my arm hurt when he connected it, and (2) my arm became a black-and-blue balloon 30 minutes after he left me. For a hour, I contemplated hitting the button, knowing that this wouldn’t go over well. When I finally decided to call him, I purposely banged my arm on the bedrail to show him how it looked. He exclaimed, “Oh Rose, look what you’ve done!” I shook my head emphatically and thought to myself, “What I’ve done? You did this to me!” A couple of times during the night I pushed the call button for him to come and reposition me. Sometimes my calls were go unanswered; other times he couldn’t understand my gestures.
In the early morning a nurse practitioner gave me the best news I could hear, that he could do everything to get discharged that day. My heart leapt knowing that I’d be released from this hospital nightmare. My last day was the worst, however. The nurse’s aide didn’t sit me up to feed me breakfast, though I gestured to her that I needed to be lifted up. Then, for the rest of the day I felt abandoned. Nobody came in my room to check on me. I hit the call button for someone to come to reposition me or to change me. Nurses walked by my room while I was sliding down my bed and laying in my urine, but nobody came to help. I remember crying in between the bed rails, praying to God to save me somehow. Thirty minutes later my prayers were answered. The doctor finally came and told me I could go home.
When the ambulance driver and assistant came two hours later, they were much more attentive to me, knowing my yes and no cues. This nightmare was over.
What Should Have Been Done
Much better communication is the key for non-verbal patients to have more comfortable hospital experiences. If the ER had transferred my information sheet to the other hospital and if I had my communication board with me, my hospital experience would have been less traumatic. Especially now that coronavirus has put many verbal patients on ventilators and made them temporarily non-verbal, hospitals should have picture/word boards and other communication tools. Several versions of communication boards are available called Viatak EZ-Boards, including ICU and EMS, with specific words and phrases for each hospital setting. Each board also has the alphabet so patients can spell words. Since these boards are inexpensive, hospitals can purchase them to have for each floor unit. According to a UCLA study, 41% of non-verbal patients said they’d have been less frustrated if they had used an EZ Board. Additionally, hospitals can purchase communication devices such as the Pocket Talker.
Besides making communication aids available, nurses and other hospital staff must be trained to understand non-verbal patients or patients who can speak but who have difficulty expressing their thoughts. Even if I had the info sheet and my letter/word board, I may not have been understood. The patient-nurse ratio may have been too high for a nurse to follow what I would have pointed out on my board. In some hospitals, the ratio is one nurse for every five patients. Consequently, devoting time to decipher a patient’s cues or messages may be impossible, especially when a pandemic is happening. Ideally, assigning a designated nurse who is trained to one or two non-verbal patients, would make hospitals stays much better. If trained staff is unavailable, then the hospital should allow a patient’s relative, friend, or caregiver to stay with them.
As I discussed in the keynote presentation, Non-verbal Communicators Can Speak Their Minds, nurses who recognize non-verbal patients’ hand gestures and facial expressions make them feel more comfortable, which may lead them to recover more quickly. If a patient who can’t speak can convey that he needs to sit up to eat, the successful communication can prevent him from choking and help him become stronger. As you may have inferred from the I.V. incident I described above, if nurses and other hospital staff are attune to what non-verbal patients are trying to say, medical errors also can be avoided according to medical research conducted in the early 2000’s.
Hospitals do exist, however, that recognize the vital need for effective interaction between nurses and patients who can’t speak. For instance, the Hospital of University of Pennsylvania (HUP) has a three-tier program. The first part involves nurses participating in online training based on Study of Patient-Nurse Effectiveness with Assisted Communication Strategies (SPECS-2). After training, nurses tailor these strategies to the needs of each non-verbal patient. For example, if a patient had a stroke and his cognitive abilities are affected, the nurse may determine that a picture board would be better for him to use than a word board. In fact, the last tier of the HUP program is a cart of augmentative tools, including communication boards, flash cards with words, and ipads with communication apps.
The HUP program should be duplicated by every other hospital. HUP has the ideal mindset. It understands that making patients feel better surpasses medical treatment. It also involves letting them communicate their needs and concerns through whatever means and responding to them in a compassionate, respectful manner.
Besides establishing comprehensive programs, all hospitals should adhere to Advancing Effective Communication, Cultural Competence, and Patient- and Family-Centered Care: A Roadmap for Hospitals by the Joint Commission. Not only does this monograph describes how to communicate with different types of patients (e.g. non-verbal, Deaf, non-English speaking), it also states that patients must be informed of treatments, procedures, and diagnosis.
Especially during this pandemic, healthcare professionals deserve all the credit for helping saving lives. Yet, they must provide the same high level of care for every type of patient. We all are vital members of society so our healthcare should reflect it.