Yes and No
Communication can be one of the most challenging aspects of hospice care. There are many instances where seamless, everyday communication with patients is difficult. There are a myriad of reasons for this, from the confusion of dementia, to stroke, to weakness, to language differences. Whatever the reason, it is up to the volunteer (and other Hospice workers) to find ways around these impediments to succeed in providing the best care possible. I have encountered some situations where communication is curtailed in surprising ways. Celia was one of my most memorable patients for her communication challenges. Interacting with her was daunting and sometimes frustrating. But it was worth the effort in the end.
When Teri, our volunteer coordinator, called me about Celia, she was concerned that I knew what I would encounter with this new patient.
“I think you are perfect for this patient,” She said, “but here’s the thing: she only says two words, ‘yes’ and ‘no’.”
“The single biggest problem in communication is the illusion that it has taken place.”
It turns out that Celia had a stroke that left her both bedridden and with severely limited speech output. The good news was that she appeared to understand what she heard. This neurological condition is called Broca’s aphasia. It can be the result of a variety of internal pathological processes (dementia, stroke, …) and external (traumatic brain injury) causes, where the person understands speech but has difficulty producing it. Broca’s aphasia can be frustrating, especially for patients who have a strong desire to communicate. And for a person who is usually the life of the party and has the gift of gab, this neurological issue can be sheer torture. It turned out that prior to her stroke Celia loved talking and could spend hours on the phone or chatting with friends and family.
I usually speak with the family of a patient with cognitive or communication issues before my first visit. An initial phone call or text helps me plan activities that will likely align with the patient’s interests, even if we have trouble communicating. Celia’s daughter was excited to tell me about her mom. Still, at the same time, she was concerned about the difficulty caretakers had communicating with her. The people at the facility sometimes had trouble reducing questions to something that someone could answer with ‘yes’ or ‘no.’ Her daughter noted with sadness in her voice that some of the caregivers could not handle the situation with her mom and became visibly frustrated.
During my conversation with Celia’s daughter, I learned that Celia loved quotes by famous authors, biblical verses, and spiritual sentiments. She also loved Christian music and the Italian singer Adrea Bocelli (a favorite artist she had in common with my first patient five years ago). Still, knowing all this, I was apprehensive. I imagined a patient screaming ’NO’ at the top of her lungs, no matter what I suggested.
The following day, after navigating the maze of a facility, I finally looked at Celia. She was peacefully dozing, propped up in bed, her legs covered with a gorgeous, homemade quilt of red and white with a music theme and pictures of her grandchildren.
“Nonverbal communication forms a social language that is in many ways richer and more fundamental than our words.”
I stood there quietly to see if my presence would rouse her. After a few minutes, I got the attention of one of the CNAs, Debbie, and asked if it was OK to wake Celia. Debbie cheerfully called out her name and patted her shoulder, telling her she had a visitor.
Celia’s eyes flew open like tightly spring-loaded roller shades, and she loudly declaimed, “NO!” She looked startled and recoiled when she saw me.
My spirits sank even as I tried to put on my best smile and wave. Thankfully, Debbie explained to Celia that I was a hospice volunteer who came to chat with her and keep her company. The startled look on Celia’s face melted away. She replaced it with a satisfied, almost angelic smile and an enthusiastic “Yes!”
Debbie turned to me and said, “She thought you were another doctor. She doesn’t like it when the doctors come. Right, Celia?”
Hearing this, Celia produced a stern look, shook her head in agreement, and, in a deeper voice, said, “No.”
I pulled up a chair and sat where Celia and I could easily see each other and hear without having to shout over the din of the facility. I introduced myself and told her I was excited to meet with her. Celia smiled at me with excited eyes and said, “Yes.” I was feeling pretty good by now and ventured some suggestions.
“I’ve got some music that I think you will like,” I said, reaching into my bag for my Bluetooth speaker.
“No…,” she said, with a sudden weariness.
“The word ‘listen’ contains the same letters as the word ‘silent’.”
Uh, Oh, I thought. I rooted around in my bag and grabbed a book of Zen-like quotes. “I have this book of spiritual quotes.”
Celia waggled her head, weighing this option, and eventually, thankfully, said, “Yes,” albeit hesitantly.
I could tell that she could revoke this approval at any minute. The pressure was on! I flipped through the little book, scanning for something catchy and inspiring.
“OK, how about this one: Maxime Lagacé said, ‘Wherever you are, it’s the place you need to be.’”
Celia looked at me suspiciously but ultimately said a qualified “yes.” I breathed a sigh of relief and then searched for something better.
“Oh, Albert Einstein said, ‘There are only two ways to live your life. One is as if nothing is a miracle. The other is as if everything is a miracle.’”
This time, she looked impressed, and I got a firm “Yes!”
The next few quotes, from Jack Kornfield, Buddha, and Thích Nhất Hạnh, got me more “yes” responses, one of which was a loud, declaimed, “YESSS!”
And so it went. I got a couple ’no’s but mostly got ‘yes’s, all with varying degrees of excitement or hesitation. That day, I learned that it was possible to communicate effectively with only two words, a lot of expression, and tonal change.
Celia injected every response with so much meaning and emotion that, in the end, we did not need any other words. The most gratifying “Yes” was her response to the end of my visit when I said I would see her the following week.
As with all patients, Celia had good days and bad days. On the bad days, I got more “no”s and sometimes “no”s that were so full of dissatisfaction that I would have to give Celia her space, leave, and come back another day. But I came to feel that even these days, we were communicating, and that was what was most important. Celia had a fantastic range of facial expressions, vocal tones, volume, and head movements, all of which she used effectively. It felt like a miraculous achievement.
“The most important thing in communication is hearing what isn’t said.”
Celia was a living embodiment of the notion that where there is a will, there is a way. When I heard about her restriction to only two words, I was skeptical that we could communicate meaningfully. I was wrong. And, in fact, because of Celia’s faith and desire to reach past her speech limitations, our communication was some of the richest I’ve had in my life. How she conveyed her desires and thoughts found its way deep into my heart. I came to know this woman with her two words; I came to be friends with her. I learned and gained more growth from interaction with her than with many people I know who are considered, by themselves and others, to be masterful communicators.
It may be like someone who loses their sight and can gather more from their hearing than before. The loss of most of Celia’s words enhanced her other communicative faculties.
One lesson here is always to keep trying and make yourself understood by whatever means. Human connection is something we all need and is worth fighting for. Celia may have been severely debilitated at the end of her life, but she lived more toward the end than most healthy, fully intact people do in the middle of their lives. By losing, she gained.
I’m glad I took her on as a patient because she taught me so much, not the least of which was what it really means not to give up. She demonstrated that just because a person is dying and is debilitated does not mean they can’t live life fully despite those severe constraints. And indeed, if she can do that, I should be able to do the same every day with my whole, rich, fully capable life.
