Beyond Words
Caregivers who work with nonverbal patients offer tips on keeping the lines of communication open

By Linda Childers
June 24, 2003

The elderly woman sat silently in her wheelchair, staring out the window of the assisted living facility. Vascular dementia and Parkinson's disease had robbed her of her health and speech.

The past few days, the typically pleasant patient with a contagious smile had been agitated and combative. The facility's new charge nurse had alerted the attending physician, who prescribed the anti-psychotic drug Respiradol to calm her down.

However, later that day, the patient's daughter visited and expressed concern about her mother's sudden aggressive behavior. The daughter asked the charge nurse if her mother had been checked for possible infections. She hadn't. So the nurse called the physician and requested more tests.

The test results solved the mystery: The patient had a urinary tract infection that caused her a great deal of discomfort-pain that, because of her condition, she was unable to verbalize.

On their behalf

Communicating with nonverbal patients can prove challenging for nurses who have limited time and often little experience dealing with a patient's unique medical condition and limitations. Both juvenile patients with autism and developmental delays and adults who suffer from Alzheimer's, strokes and other neurological conditions often are unable to verbally pinpoint the cause of their pain or distress.

"It is especially crucial for nurses to serve as advocates for their nonverbal patients," said Cynthia Emmons, RN, of the Encephalogic Medical Group in Oxnard, Calif. "If they suspect that a doctor is off-base in their treatment plan, they need to speak up on behalf of the patient."

Effective communication with nonverbal patients is an issue of paramount concern to the Alzheimer's Association. According to a 2002 study published in the University of North Carolina's Annual Review of Public Health, the number of people living with Alzheimer's will double by the year 2050, even if major treatment breakthroughs occur before then.

"In the years to come, nurses will see a definite increase in the number of patients who are unable to verbally communicate," said Elizabeth Edgerly, Ph.D., area program director for the Northern California chapter of the Alzheimer's Association. Although patients with Alzheimer's and other dementia can communicate emotionally, they "gradually lose their ability to remember and use words," she said.

Edgerly and other staff at the association routinely offer in-services to physicians and nurses on how to better communicate with nonverbal patients. "If a patient [with a neurological condition] has a sudden cognitive or behavioral change, one of the first things to consider is an acute illness," Edgerly said. "With neurological diseases, you don't see abrupt changes with a patient's condition, so a sudden change signifies that something else is happening."

The association offers guidelines to health care providers on how to effectively work with nonverbal patients. It recommends speaking directly to patients and treating them with respect and dignity. It also suggests avoiding open-ended questions that can add to the patient's confusion and stress, and instead recommends asking specific questions that require a yes or no answer.

Edgerly also shows nurses how to recognize and interpret a patient's facial expressions, use gestures and visual aids and speak in short, simple sentences when explaining procedures and tests.

Lisa Overton, RN, of the Encephalogic Medical Group, works with nonverbal patients who suffer from a variety of neurological conditions.

Over time, she has learned to use different communication methods when working with patients. Some patients use flash cards with words or phrases on them; others use chalkboards with words and pictures that they can point to, in order to express what they cannot verbalize.

"There isn't one particular method that works with all nonverbal patients," Overton said. "There are even times nothing seems to work and you just have to keep trying and relying on your own instincts and assessments."

Overton also consults with a patient's friends and family members to fill in the gaps. If a patient doesn't have family, or is brought in from a skilled nursing facility or assisted care facility, Overton calls the facility to investigate all changes leading up to the visit and obtains a copy of the patient's medical records and medication regimen.

"I also include the patient in the conversation even if they are really out of it," Overton said. "Just because they can't talk doesn't mean they are unable to hear or understand at some basic level."

Childspeak

Nonverbal adult patients aren't the only ones who challenge caregivers. Many pediatric patients who suffer from illnesses that include autism and severe developmental delays also are unable to convey pain and other signs of illness.

Maureen Sheehan, MS, CPNP, RN, works as a pediatric nurse practitioner at Lucile Packard Children's Hospital in Palo Alto, Calif., where she treats children with conditions that range from autism to severe mental retardation.

"A nonverbal child's caregiver is a nurse's biggest and best ally," Sheehan said. "They know the daily routine of the child, and they know when something is wrong."

Treating nonverbal pediatric patients can prove especially challenging because many children with developmental delays often don't exhibit signs of illness.

"Where most kids would be screaming in pain because of an ear infection, a child with autism might show an increase in aggression or a tendency for self-injury," Sheehan said.

Because children with developmental delays can become easily agitated and overstimulated, Sheehan tries to prioritize their care, conducting the most crucial tests first, and keeping their surrounding atmosphere as calm and quiet as possible.

Incentive system

When children are hospitalized at Packard, Sheehan and other nurses work with the staff's child-life specialist to plan an incentive system tailored to each patient's individual needs.

"We've had developmentally delayed children who don't like to take medication or have their dressings changed, and this is where our incentive system can make the process so much easier," Sheehan said. "If they really like riding in the elevator, they can get a ride if they take their meds, or receive stickers if they go to physical therapy."

Susan Cogan, MSN, RN, works with special education students as a school nurse at Mauzy School in Alamo, Calif., and has consulted with other special education centers and nonprofits for more than 14 years. "Special education patients crave routine, and for them to become ill and have to go to the hospital can be a traumatic experience," Cogan said.

At Mauzy, Cogan or one of the teachers always accompanies students to the hospital and stays with them until their caregiver arrives.

"Sometimes, even with low-functioning children, you can get them to give you a smile in response to yes or no questions," Cogan said. "I try to keep questions at a very basic level and to use picture books if possible so that children can point at pictures to help them communicate."

In the more difficult cases, Cogan said the best solution is often for nurses to use a checklist and rule out whether the child is in pain or has an infection.

When all else fails, sometimes resorting to nonverbal communication is the best answer.

"Never forget about the importance of touch and empathy," Cogan said. "It can help to open communication channels in some of the most challenging cases."

Contact Linda Childers at eastbaypr@aol.com