Courage to Communicate

Working with end-stage dementia patients is a challenge. An interdisciplinary team of caregivers strives to communicate with their nonverbal patient to provide compassionate care. The team explores the ethical and moral implications of managing patients with terminal conditions.

Professionals working at the Noble County Skilled Nursing Facility share their perspectives on care giving. [dial-up OR broadband]

For a class project, nursing student Megan Thompson observes a palliative care assessment of Carl Sunderland, an end-stage dementia patient.

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Mary Beth Van Winkle, RN, shares some of her nursing strategies with Megan.

When we entered Carl Sunderland’s room, I clenched my jaw and made tight fists, hands by my side; it was my way of reminding myself to stay strong and keep my cool. This was my first time face-to-face with a patient with dementia. I knew this class project would be a learning experience, but I wasn’t expecting the exercise to be this intense. The first moments of the assessment were powerful; it’s not every day that I see a grown man in a restraining chair, drooling on himself.

Still, it seemed that beneath the facial contortions caused by his dementia, Carl was smiling—it looked as though he was genuinely happy to see the registered nurse I had been tagging along with, Mary Beth Van Winkle. There was no way to tell for sure if the smile intentionally was conjured by Carl, or if the mouth movement was simply a muscle spasm, but I had a gut feeling he was trying to communicate with us.

“Hi Carl, how are you?” Mary Beth projected in a louder than usual voice as she grasped his hand between spasms. “This is my new friend Megan Thompson; she’s a nursing student who wants to observe me doing my job. Is that alright with you?”

“Hi Carl,” I squeaked. I made eye contact with him and touched his shoulder. “It’s nice to meet you.” He made a gutteral noise and formed a smile for a split second as well. With that, my anxiety began to fade a bit, but I could still hear my heart in my ears. There wasn’t enough room to take a seat, so I simply stood with journal in hand, taking notes as Mary Beth performed her assessment.

Mary Beth begins her weekly palliative care assessment of Carl by checking his vital signs. [dial-up OR broadband]

Mary Beth expands on the tactics she uses to communicate with nonverbal patients. [dial-up OR broadband]

The caregiver’s attention to patient constipation is of the utmost importance. [dial-up OR broadband]

Checking regularly for pressure sores is a vital for maintaining patient comfort. [dial-up OR broadband]

After Carl’s assessment, Mary Beth explains to Megan the importance of getting to know the person within the patient.

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Carl is 68-year-old man with end-stage alcohol-induced dementia.

Mary wrapped up her assessment and we gave Carl some time to rest before his next appointments, which were scheduled in half an hour. In the meantime, Mary Beth shared some of her nursing strategies.

“The first time’s always the hardest, but it’ll get easier. Trust me.” Mary Beth must’ve been able to tell from my furrowed brow that I was still a little distressed as we closed the door to Carl’s room. “Let’s chat in my office before Carl’s next appointment.”

On the way to Mary Beth’s office, we passed several residents. Some of them glared at me, others smiled politely, while some simply stared blankly into space. They reminded me of the patients I used to see when I visited my great-grandmother at her nursing home before she passed away. She was one of the few residents who didn’t seem so sad about being institutionalized; she would strike up a conversation with just about anyone.

We arrived at Mary Beth’s office, and I was slightly surprised and relieved by how untidy the workspace was. “Sorry about the mess,” she declared. “I feel guilty about spending a lot of time cleaning my office when I could be comforting one of the residents instead.”

“Oh, this is nothing,” I reassured her. “My apartment looks like a landfill these days.”

“Good, you should feel right at home, then,” she laughed. “Have a seat.” She gestured to a chair as she began to root through the clutter. “Let me pull Carl’s file.” While she collected Carl’s materials, I scanned the walls of her office. The most prominent decoration was her framed registered nurse certificate from the State of Ohio Board of Nursing. I wondered how long it would be before I had one of those with my name on it.

“Pretty fancy frame, huh?” Mary Beth must’ve caught me admiring it. “I still try to keep up with the Board, you know, more than just for renewing my licensure.” She flipped around her monitor to show me an e-mail she had received from the Ohio Board of Nursing.  “They have an e-news letter now that you can subscribe to. Don’t let me forget to give you the link.”

Subscribe to the State of Ohio Board of Nursing eNews Letter

“Anyway, back to Carl,” Mary Beth said after a brief pause. She sat up in her chair and focused on his chart. “He’s one of the youngest residents here, only 68 years old, end-stage dementia, brought on by years of excessive alcohol abuse.”

“How’d he become such a severe alcoholic?” I asked.

“Well, unfortunately for us,” said Mary Beth, “Carl’s kind of a one-two punch, so to speak. He can’t communicate verbally because of his dementia, plus, just about all of his family members have already passed away, so we can’t ask them, obviously.”

“That’ll make the detective work pretty tricky,” I said.

“To say the least,” she said. “Luckily, the social worker who works with Carl, Mary Topeka, gathered some info from his power of attorney, so you’ll get to pick her brain when we meet her in few.”

Mary Beth went on to tell me that one of Carl’s old drinking buddies stopped in to visit once and shed a little light on Carl’s background. I discovered that Carl came from a tight-knit Czech community in Cincinnati. When many of his neighbors returned to Europe after Czechoslovakia split in the early 90s, Carl decided to stay stateside because he had become a successful accountant. It was difficult to picture the shell of a person I had just observed as a busy accountant in the city.

“Now we think he may have developed Wernicke-Korsakoff Syndrome,” Mary Beth said while shaking her head.

Fact Sheet: Wernicke-Korsakoff Syndrome (Alcohol-Related Dementia)

I made a mental note to take it easy at the end-of-the semester throw down that my roommates and I were hosting in a few a weeks.

“Luckily,” Mary Beth said in a more optimistic tone, “Carl’s friend told us that he had one salvation throughout his life—the church. Carl is deeply religious, so we set him up with spiritual counselor, Joseph Lee. You may get to meet Joseph today, actually.” I was filled with hope as I realized that, despite his dementia, Carl could still appreciate certain aspects of life. “If I didn’t take the time to stop Carl’s buddy on his way out the door, we may have never known that Carl was a really religious guy.”

“Good thing you did!” I told her.

“I always get as much background as I can about my patients, it helps you to be more compassionate when you realize they lived this entirely different life before they ended up here, dependent on others.”

I appreciated Mary Beth’s strategy for being a compassionate nurse. I can’t forget that there’s a person within every patient.

Megan meets with Mary Peticca, Carl’s social worker, and Joseph Lee, Carl’s spiritual counselor.

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Social worker Mary Peticca meets with Carl once a month.

Before I knew it, half an hour had passed while we were chatting and the time had come for Carl’s appointments with his social worker and spiritual counselor. We stopped by Carl’s room again and transferred him from his bed to a transition chair. We were headed to one of the facility’s multipurpose rooms where Carl was to meet with Mary Peticca and Joseph Lee. I felt fortunate to be able to get a sense of how members of an interdisciplinary gerontological team work together to care for a patient.

“You’re lucky that both Mary P. and Joseph are here on the same day,” Mary Beth said as we strode to one of the care facility’s multipurpose rooms, pushing Carl in his transition chair. “They each work in several different facilities throughout the week, so it’s rare you caught them both at once.”

“I guess Joseph would say I’m blessed,” I said with a grin.

“That’s true,” chuckled Mary Beth.

“Do you mind if I try pushing Carl along in his transition chair?” I asked. I was feeling far more comfortable now after getting the low-down on Carl’s history.

“Hmmm…” She started. “I know you’re perfectly capable, but unfortunately, I’ve always got to think about the legal recourse in just about every action I take while I’m at work. Say there was an earthquake, or some natural disaster, seconds after you took over pushing, and somehow Carl got hurt. We’d be in big trouble, since you don’t have your license yet.”

“Gotcha, legalities,” I said, bowing my head a bit.

“Legalities,” Mary Beth murmured. “Those lawyers always have me thinking twice.” Before long, we had reached the multipurpose room where Mary Topeka was waiting for us. Mary Beth introduced me, and I had a chance to talk to Mary Peticca to get a clearer picture of Carl’s background and an update on his current social situation.

Social worker Mary Peticca offers Megan a glimpse of Carl Sunderland’s history. [dial-up OR broadband]

Just as I finished peppering Mary Peticca with questions, Joseph Lee popped in from another spiritual counseling session down the hall. “I hear there’s a future nurse in our presence today,” he exclaimed as he strolled through the door. He was holding a Bible and sporting a wide smile.

“There is indeed, Joseph,” Mary Beth responded. “This is Megan Thompson.”

“Hi Joseph, pleased to meet you,” I said as I stood and shook his hand. “I’m working on a class project to get a sense of what being a gerentological nurse is all about,” I said. “So, if you don’t mind, I’d like to act as a fly on the wall while you perform your spiritual counseling today.”

“I don’t mind in the least,” said Joseph, and turned his attention back to Carl.

Spiritual counselor Joseph Lee meets with Carl [dial-up OR broadband]

Following Carl’s spiritual session with Joseph, I thanked the three caretakers profusely and was sure to gather all of their contact information so that I could send them each personalized thank-you cards for taking the time to help me. As I said good-bye to Carl, I could tell he was getting tired.  He seemed more irritated than before. I shook his hand and felt totally at ease around him—a total 180 from my state of mind just a few hours earlier.

I signed out at the front desk and headed to the nearest bus stop. While walking, I couldn’t get something that Joseph had said out of my head. He mentioned briefly that Carl can’t communicate. That just didn’t seem to be the case! It may’ve just been a slip of the tongue, or an off-the-cuff remark, but one of the first things I noticed about Carl was his expressions and his eyes. He did respond to people, I was sure of it! Mary Beth, I noticed, even changed her facial expressions to match his while working with him. Shouldn’t this be considered a form of communication?

With a rush, I got off of the bus a few stops early in order to pop into the university’s library. After a quick search, I found a great two-page check list about how to communicate with adults with dementia. Maybe, if I have the courage, I can include it with Joseph’s thank-you card.

Communication Difficulties: Assessment and Interventions in Hospitalized Older Adults with Dementia